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Avatar universal

Difficulty swallowing

I am on Levothyroxine and I take 75mcg. I have my follow-up blood test for my Levothyroxine review next week as well as a complete blood count, ferritin and other things (the doctor wasn't specific in my medical notes, she just wrote "others" for blood tests). I have over 80 symptoms - some of them worse than others on certain days and I had an abnormal ultrasound done 3 years ago but no fine needle biopsy done. I would really like some advice concerning my next appointment with my doctor and I have written a letter to both my doctor and practice manager stating that I am "extremely concerned" about the symptoms I continue to experience. I had one bad experience with my doctor in the past in which he said at the appointment he would arrange a follow up to review my symptoms and when I went to the follow up he said the same thing again. Since I am afraid it'll happen again I haven't felt confident to address my symptoms. How best can I express my concerns please?

Thank you
16 Responses
Avatar universal
Please post your last several sets of thyroid related test results and reference ranges shown on the lab reports.  Please tell us about some of your worst symptoms.  How long have you been on the 75 mcg of Levothyroxine?  What was the diagnosed cause when you were started on the Levothyroxine?
144586 tn?1284666164
Difficulty swallowing is an ocasional side effect of levothroyxine, and the reasons are unclear. It was reported as a side effect several times to the FDA, but they have not altered the PDR handout. As for your other symptoms, you haven't elaborated on them, so it is impossible to comment. In general, most physicians address "one single issue" per visit.
Avatar universal
Thank you for your response Gimel.

I have been on the 75mcg Levothyroxine since September. It was moved up from 50mcg in August which I have been on since May 2013.

When I was started on the Levothyroxine it was for underactive thyroid. My TSH was 44 (0.2-4.2) and my Free T4 was 10.9 (12-22) That was for May last year.

Here are all blood test results from May this year (I didn't want to include all of them as there are so many):

May (50mcg)

TSH - 5.2 (0.2-4.2)
Free T3 - 5.2 (3.9-6.8)
Free T4 - 16.6 (12-22)

July (50mcg)

TSH - 4.6 (0.2-4.2)
Free T4 - 18.7 (12-22)

August (50mcg)

TPOab - 199 (<34)
TSH - 0.02 (0.2-4.2)
Free T4 - 20.3 (12-22)
Free T3 - 6 (3.9-6.7)

October (50mcg)

TSH - 0.80 (0.2-4.2)

November (50mcg)

TSH - 6.5 (0.2-4.2)
Free T3 - 4.3 (3.9-6.7)
Free T4 - 14.7 (12-22)
(Moved up to 75mcg after this result)

Worst symptoms I have:

Excessive tiredness - sleeping more than once a day - I take afternoon naps in the afternoon and I can remain asleep for about 3-4 hours.

Weight loss - even when I eat a lot.

Cold hands and feet.

Night sweats and hot flashes in bed.

Slow movements in legs and arms.

Slow speech.

Pins and needles - mainly in bed.

Breathlessness - I have been getting chest pain as well.

Dizziness when standing from sitting - doctor says that because I'm young and slim this is common.

Sensitivity to the sun - my eyes water when I go outside in the sun.

Insomnia.

Tenderness in backs of legs - probably nothing thyroid related.

Cold intolerance.

Cravings for sweet and salty foods.

Puffy eyes.

Dry eyes.

Heavy, light, painful, late, early, long, short, irregular periods.

Low basal body temp - at best my temp first thing is about 33.5 degrees Celsius but I don't shiver.

Sweating.

Dry and pale skin.

Dark rings under eyes.

Constipation.

Slow and weak pulse.
Avatar universal
Thanks for your reply. Here are a list of symptoms:


Excessive tiredness - sleeping more than once a day - I take afternoon naps in the afternoon and I can remain asleep for about 3-4 hours.

Weight loss - even when I eat a lot.

Cold hands and feet.

Night sweats and hot flashes in bed.

Slow movements in legs and arms.

Slow speech.

Pins and needles - mainly in bed.

Breathlessness - I have been getting chest pain as well.

Dizziness when standing from sitting - doctor says that because I'm young and slim this is common.

Sensitivity to the sun - my eyes water when I go outside in the sun.

Insomnia.

Tenderness in backs of legs - probably nothing thyroid related.

Cold intolerance.

Cravings for sweet and salty foods.

Puffy eyes.

Dry eyes.

Heavy, light, painful, late, early, long, short, irregular periods.

Low basal body temp - at best my temp first thing is about 33.5 degrees Celsius but I don't shiver.

Sweating.

Dry and pale skin.

Dark rings under eyes.

Constipation.

Slow and weak pulse.
Avatar universal
Hypothyroid patients frequently find that their body does not adequately convert T4 meds to T3, with resultant low Free T3 and hypo symptoms, one of which can be difficulty swallowing.  The prevalence of the conversion problem makes me wonder if the symptom of difficulty swallowing is more likely due to that, rather than a side effect of Levothyroxine.  
Avatar universal
So, based on your TPO ab result and other tests and symptoms you have Hashimoto's Thyroiditis as the cause for your hypothyroidism.  Most of your symptoms are clearly related to your hypothyroidism.

Currently your Free T3 and Free T4 are too low in the range and are the source of your hypo symptoms.  So you need to have your thyroid med increased as necessary to relieve symptoms, rather than just raising meds enough to get your test results within the so-called "normal' ranges.  This may be difficult for you, since I noticed you are in the UK and subject to the practices of the NHS.  

In the UK doctors have the "Immaculate TSH Belief" and typically only want to prescribe T4 meds and just enough to get the TSH within range.  That doesn't work for many hypo patients.  Many members say that symptom relief required Free T3 in the upper part of the range and Free T4 at the middle of its range, at minimum.   Another problem you face is that taking adequate thyroid meds often suppresses the TSH below range, and doctors then will try to tell you that you are hyper and have to reduce meds.  In reality you are hyper only if having hyper symptoms due to excessive levels of Free T3 and Free T4.  So keep that in mind.  

What you need most is a good thyroid doctor.  By that I mean a doctor that will treat clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight from this link written by a good thyroid doctor.  

http://www.hormonerestoration.com/Thyroid.html

One further complication besides the NHS is that from your test results it appears that in August your Free T3 and Free T4 moved up toward the top of the range, with no change in meds.  That might indicate that you have nodules on your thyroid gland, as a result of the Hashi's.  Nodules can sometimes leak thyroid hormone faster than normal and cause swings from hypo to hyper and back.  How were you feeling back in August?  

When you see your doctor again, I suggest that you should request an ultrasound test of your thyroid gland to check for nodules.  You need to continue to request med increases as needed to relieve symptoms.  I also suggest that you should ask to be tested for Vitamin D, B12 and ferritin, since hypo patients are frequently too low in the ranges for those as well, and they are important for hypo patients.  And most important you need to find out if your doctor is going to be willing to treat you clinically, as described above.  

If you have trouble getting adequately treated, you might heed this advice from a fellow UK member who was finally able to get what she needed.  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

If all else fails you might have to consider going private.  If so, I have the names of some good thyroid doctors in the UK, mostly in the London area.  
Avatar universal
Thanks Gimel.

I figured it was a Free T3 issue.

I wasn't feeling too bad in August. As I can recollect I didn't have many hypothyroid symptoms at the time - when I say I didn't have many hypothyroid symptoms I mean that they weren't as bad as they are now. I think I only had one day when I felt sick, jittery and tired but I don't know if that was down to the suppressed TSH or not.

I know that my doctor is testing my ferritin again and other things - what the other things are I'm not sure. I remember the doctor telling me to tell the nurse at the blood test that I'm having other things done as well as ferritin and the thyroid medication review, so can I ask for B12 and D to be done as well or do I need to go back to my doctor and ask? There was one time when the nurse who did the blood test some months ago asked me what my doctor wanted testing and at the time they wanted D and B12 so perhaps asking for these to be measured won't do much harm.

My ferritin has been low in the past but I've not been prescribed iron supplements because the ferritin rises on its own.

I'll look at the link you provided. Most helpful. :)
Avatar universal
You'll probably have to ask the doctor to test for the Vitamin D, B12 and ferritin.  For info, D should be about 55-60, and B12 should be in the upper end of its range and ferritin should be about 60 minimum for women.  If below those targets, supplementation will be beneficial.
4851940 tn?1515694593
The medication that you are on is for an underactive thyroid.
A lot of the symptoms that you list can be caused by other issues.

If you have a problem with that particular doctor, I suggest that you see a different doctor at the practise (there are usually more than 1 doctor at the surgery and you should be able to choose which one you see) or change to a different doctors surgery altogether.

I suggest that you write a list of all the symptoms, the worst being at the top of the list and number them.  Give this to your doctor but tell him that your main concern is with having difficulty in swallowing.  Ask if he can refer you to get a barium meal swallow xray done.  Sometimes difficulty in swallowing can be from a deviation in the oesophagus.

A lot of the symptoms that you mention (pins and needles and getting dizzy) can all be problems with the spine and pinched nerves.  Swallowing difficulties can also sometimes be due to spinal problems, especially if there is degeneration in the thoracic area of the spine (that is the middle section of your spine).  Do you have a job that requires a lot of repetitive movements?  Just something to think about.

I have found that if you do not go and complain about your problem to the doctor, they seem to brush you off or think that things are OK.    If it helps, make an appointment and say to the doctor that you have a number of concerns, but the most bothersome one is .......  
I find that if the doctor gets bombarded with lots of information, they are not able to deal with this.  

In my doctors practise (and I live in the UK) the computer message board in the surgery comes up with a message saying that you can only discuss 1 problem with the doctor.  I do not agree with this, because sometimes lots of little things add up to one big picture and all the symptoms may or not be all connected.  Some doctors at my practise are fine with more than 1 problem, but others (you get to know which ones they are) will only deal with 1 health issue at the appointment.

With the breathing problems, the doctor can do a lung function test there and then to establish if there is any evidence of asthma.  He can listen to your chest and also send you for a lung function test at the hospital as well as an ECG to check out your heart if he suspects the chest pains may be due to that.

Although the tiredness may be connected to the thyroid problem, a blood test to check your iron and B12 levels would also be a good idea.  Deficiency can cause tiredness.

For your constipation, make sure that you eat lots of fresh fruit and vegetables, fibre foods like wheetabix or shredded wheat and drink plenty of fluids, especially water.  Going for walks and doing some form of exercise will also help to get the bowels moving.  Tell your doctor about this problem too and ask if he can prescribe stool softening gels for you to drink (you mix them up in a glass of water and drink it).  You can purchase these without a prescription from the chemist - it may be cheaper for you to buy them straight from the chemist if you have to pay for your prescriptions, so do check.  Avoid using laxatives long term (they are OK for short term use).

If you are not in receipt of any Benefits and have to pay for lots of medications, it may be cheaper for you to pay for a pre payment Certificate.  The chemist attendants will give you information with regard to that and the forms that you need to fill in to apply for this.  You also need to work out whether it is cheaper for you to do this.  

Let us know how you get on.

Best wishes.
Avatar universal
When I look at the list of symptoms for clara02, I can show you all but possibly two of them on a list of symptoms that are frequently related to being hypothyroidism.  In addition, she has already been diagnosed with Hashimoto's and hypothyroidism and is taking thyroid med.  Unfortunately her dosage is too low and her Free T3 and Free T4 levels are too low in the range, consistent with having hypo symptoms.  

So why point to difficulty swallowing or any other possibility problem and risk the doctor getting off on the wrong track?  If it were me I would strongly advocate being hypothyroid still and in need of  med increases to relieve symptoms.   She should not really have too much difficulty getting med increases at this point since her TSH is even above the range, and UK doctors will at least usually respond to that.   If more ammunition is needed, then this scientific study should help.  In the study they proved that hypo symptoms correlate best to Free T3 levels, and did not correlate to Free T4 and TSH at all.

http://informahealthcare.com/doi/abs/10.1080/13590840050043521
4851940 tn?1515694593
If there is a problem with the dosage of the medication and the symptoms are not being helped by that dosage, the doctor can arrange for blood tests to be taken to check the levels and adjust the medication or prescribe other suitable medication to balance the thyroid levels.

It is the doctor's decision depending on the blood results whether the dosage of the medication is low or whether the dose needs to be changed.

It is up to  Ciara02 to make an appointment with a different doctor at her surgery if she is not happy with the one she saw and to talk to him about her concerns.  

A lot of the symptoms on  Ciara02's list can also indicate other medical issues too and one should not presume that all the symptoms are related to the Hashimotos.

Suggesting to Ciara02 that she sees a private doctor is premature at this stage.

In the UK, most UK doctors do not like to be referred to web link studies.
And sometimes suggesting such, can really annoy them.




Avatar universal
You said, "A lot of the symptoms on  Ciara02's list can also indicate other medical issues too and one should not presume that all the symptoms are related to the Hashimotos."  I am not presuming that every single symptom is due to her Hashimoto's: however, when the predominance of her symptoms are on lists of typical hypo symptoms and her Free T4 and Free T3 are much too low in the range, and her TSH is even above range, why should she fret about other possible problems until this one is addressed.  That was my point tinsuggesting that treating her hypothyroidism should be the main issue to discuss with the doctor.

If doctors do not like to be referred to web link studies they are probably not very comfortable with their knowledge and are not likely to be good thyroid doctors anyway.  Our experience through UK members is that the chances of finding a good thyroid doctor within the NHS are very slim, thus consideration of going private..
4851940 tn?1515694593
The symptoms of Hashimoto's Thyroiditis that I am aware of are:

possible enlarged thyroid called a goitre and this could be the cause of the difficulty in swallowing as well as the previous conditions I mentioned in my first post.  The other symptoms with this autoimmune disorder may include:

Weight gain; fatigue; paleness or puffiness of the face; joint and muscle pain; constipation; inability to get warm; difficulty getting pregnant; joint and muscle pain; hair loss or thinning, brittle hair; irregular or heavy menstrual periods; depression; slowed heart rate.

The symptoms of Hashimoto's thyroid may be similar to those for other medical conditions and therefore, it is important to see your doctor for a diagnosis.

There is nothing wrong to think about symptoms that could be as a consequence of other illnesses and/or problems related to muscular skeletal problems.  Dizzy turns and pins and needles can very much be connected to spinal issues as well as inner ear problems.    I certainly would not be happy if I was told by a doctor that it is common to feel these symptoms because one "young and slim".

Unfortunately, not everyone in the UK can afford to pay for private medical screening.  

We are not here to argue about the UK doctors nor about Hashimoto's Thyroiditis.  
Avatar universal
Thank you Jemma for your reply.

I have written a letter to my doctor and sent a copy of this to my practice manager. They detail all 86 symptoms. I have also complained to my local NHS complaints office – what good that’ll do me I don’t know.

My last GP was only going to refer me for a barium swallow or to an ENT if the omeprazole I was on the trial period for didn’t work. Because I changed GP practices the practice I am now with doesn’t have my omeprazole prescription on file.

I don’t work so I don’t do any repetitive movements.

I had an ECG but that was normal. The only thing mentioned was “normal rhythm with sinus arrhythmia” but I was told this was normal and common. I haven’t had lung function done so perhaps this might be a good thing to think about.

Iron was checked on Wednesday, still waiting to hear back about that.

I was prescribed laxatives by my GP for constipation but they made me sick even when I mixed it with water.

I have got a pre-payment certificate.
Avatar universal
Jemma, I had a goitre a couple of years ago, this has since gone down.

My endocrinologist told me I have Hashimoto's so is it possible I do not? I am confused.
4851940 tn?1515694593
First off, if you are not at work and in receipt of any Benefit, like Housing, Job Seekers Allowance etc., then you will qualify for free prescriptions.  Ask the chemist for a form to fill in.  If you are entitled to free prescriptions, you will get them and as you have paid for a prepayment certificate when you qualified for free prescriptions, you can ask the Chemist or get in touch with the organisation that issues the prepayment certificate with regard to a refund.

Glad to know that you have had a blood test done to check your iron levels.  If there is any problem with that the surgery will contact you, or you can wait a week and get in touch with them with regard the results.

The laxative that you were prescribed by the doctor, were these the stool softening ones? - they don't have any specific flavour if it is the one that I am thinking of and if so, you can add your favourite juice to it.  Otherwise, make an appointment to see one of the doctors at the surgery that you get on well with and only discuss the constipation issue with him.  There are different types of medications for your constipation, so if that one did not suit you, the doctor can try a different one.  Follow my advice on healthy eating with fibre and lots of fluids too.   You may also benefit from glycerine suppositories or proctosedyl suppositories if you have haemorrhoids (piles).  Straining with constipation can lead to other problems.  

With regard to the Omeprazole, even though your doctors practise does not have all the medical records, does not stop you from asking the doctor for a prescription of this if it helped you.  If you have a packet you can take it and show it to the doctor.   Eating small amounts of food at any one time, can help with regard to acid reflux and swallowing problems.  When you eat also have a drink so that the food is not too solid while it travels down the esophagus.  Also don't eat or drink too close to bed time.  You do not say whether the Omeprazole worked or not, but you can tell your doctor of your concerns and ask if he can refer you for the barium meal swallow.   This would show up any problems along the esophagus.

You do not say how long ago you sent off the letters.  Wait until the holidays are over and if you still have not even had an acknowledgement, send a reminder letter that you would like a response.  They will investigate your complaints and will get back to you with their findings, but this can taken time.

What I suggest you do when you go for your appointment is take someone that you trust (a parent or partner) with you.  They can just sit in the room and listen and only say anything if they are asked.  This will make you feel more at ease at your appointment.

That is a good thing that the goitre has gone down.  I too would be confused, but as I am not a specialist in this field, I would again ask your doctor about this.  Make a separate appointment to discuss this with your doctor.  

Remember that the doctor only has a 5-10 minutes to deal with each patient so if it helps you, write down and discuss with him the most troublesome problem that you have.  I find saying "I have lots of problems, but the one that I have come to see you about that this is bothering me the most is ........."     That way the doctor concentrates on your most bothersome issue, but could ask you about other health issues if he has the time.



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