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Endo appointment

I had my endo appointment on Friday and this is what has come out of it:

- She is discharging me back to my doctor so that my Levothyroxine dose can be titrated. She wants my dose to be titrated because she believes that in the near future I will be needing more Levothyroxine. I am currently on 75mcg and I was increased a couple of weeks ago from 50mcg.

- She believes my TSH back in August was suppressed because I took too much Levothyroxine. I have researched and can't find many articles/sites that say a suppressed TSH can be caused by Hashimoto's.

- She wants my figures to be stable over the course of 3-4 months. I can't see how she will be able to see that for herself if she is discharging me back to my doctor.

- She will not order an ultrasound because she thinks my difficulty swallowing will sort itself out on the correct dose of Levothyroxine.

- I told her about some dizzy spells I had been getting and she said that since my usual doctor may be doing an ECG/EKG it is something she is leaving to them. She thinks it could be blood pressure related, though my blood pressure doesn't drop out of normal range and in some cases it goes up by more than 10 points.

- She says antibodies against TPO aren't affected by diet and she can't see why I would need to go gluten free to reduce them. But she has agreed that in some way a gluten free diet for me is beneficial. I feel I've been given a mixed message with that.

- She suggested I could retake the coeliac screen since I did not do the gluten challenge for very long because I didn't know how long I needed to do it for - before I did it for 2 weeks and I read on the Coeliac website that it needs to be 6-8 weeks long.

- She has commended me for spacing out the iron tablets, Vitamin D supplement, Vitamin B12 supplement and the Levothyroxine despite taking so many each day.

- She is pleased my Vitamin D level is in a more acceptable range and would like me to continue taking the supplement for this.

- Because I have hair on my face, front of body and buttocks as well as acne on my face, chest and back she has agreed to order a test to check my FSH and LH levels, provided that I get them tested within 7 days of my period. Unfortunately my period has just started - as luck would have had it, it started an hour after I left the appointment but I didn't know it was my period because there was no pain and it is a week early. And I was spotting. My cycles have been 21 days, 27 days, 30 days and 35 days. The endo does think it's a thyroid issue.

- I don't have adrenal fatigue because my cortisol levels for the ACTH stimulation test were normal, in fact they looked pretty good for a hypothyroid person to have, and caffeine would not have affected the test in any shape or form.

- She is putting in the letter to my doctor to make sure I am not being given generic Levothyroxine because she thinks that may have impacted on my blood test results.

The endo has said if I have any problems with anything the department will arrange for me to be looked at again during an open appointment.

Medications I currently take:

- Levothyroxine sodium - 75mcg. (1 50mcg and 1 25mcg) in the afternoon.
- Ferrous Fumarate - 210mg. (3 tablets spaced over each day and 4 hours away from the Levothyroxine)
- Vitamin D3 - 3000IU. (1 sublingual spray each morning)
- Vitamin B12 - 1000mcg, methylcobalmin (1 sublingual lozenge each morning) The endo and the doctors do not know I take the B12 because my result is normal but low.

May 2013

TSH - 22 (0.2-4.2)
Free T4 - 10.9 (12-22)
Started on Levothyroxine at 25mcg, then 50mcg and then 75mcg

August 2013

TSH - 4 (0.2-4.2)
Ferritin - 15 (30-400)
Had my Levothyroxine increased to 100mcg and started on ferrous fumerate 210mg

November 2013

TSH - 4.3 (0.2-4.2)
Free T4 - 15.3 (12-22)
Free T3 - 5.5 (3.1-6.8)
Ferritin - 21 (30-400) - up from 15 in August
Had my Levothyroxine increased to 125mcg

December 2013

TSH - 4.6 (0.2-4.2)
Free T4 - 15.6 (12-22)
Anti-TPO antibodies - 41 (75)
Vitamin B12 - 363 (180-900)
Folate - 4.1 (4.6-18.7)

January 2014

TSH - 2.7 (0.2-4.2)
Levothyroxine reduced to 100mcg
(I changed doctors because this doctor dosed me on TSH alone and I also started taking Vitamin D, Vitamin B12 and ferrous fumarate)

February 2014

TSH - 3.6 (0.2-4.2)

March 2014

TSH - 1.87 (0.2-4.2)
Free T4 - 16.8 (12-22)
Free T3 - 4 (3.1-6.8)
Anti-TPO antibodies - 33.5 (<34) - down from 41 in December
Anti-TG antibodies - 103.5 (75) - increased since taking the Vitamin D spray
Folate - 4.9 (4.6-18.7)
(I did not take any more Levothyroxine than usual. Doctor moved my dose down to 75mcg)

August 2014

Anti TPO antibodies - 141 (75) - increased from 59.6 in June
Ferritin - 28 (30-400) - increased from 21 in August
(The doctor said I didn't really need the ferrous fumarate anymore so this was stopped. I changed doctors again because I couldn't get over why the iron was stopped when my ferritin was low and out of range)

November 2014

TSH - 6.1 (0.2-4.2)
Free T4 - 14.9 (12-22)
Free T3 - 4.3 (3.9-6.7)
(Levothyroxine increased to 75mcg from 50mcg. The new doctor also thought my iron levels could do with being boosted so the iron was again added to my list of prescriptions)

The endo thinks all my symptoms are hypothyroid and will all resolve once I am on the dose of Levothyroxine that's right for me. It sounds too good to be true considering I have so many varied symptoms. I'm hoping she's right. Is it possible that she could be? And why is she discharging me back to my doctor if my thyroid levels are not yet stable?
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Avatar universal
Thanks, I had the ECG done today and the nurse who did it said there was nothing of immediate concern. She could only say so much as she wasn't a cardiologist so that's good news and reassuring considering the amount of heart disease/stroke in the family. :)

I'm quite happy to wait until next month to get the LH and FSH done. It's not urgent but the endo would like to see what my levels are like. It's quite possible that at the time I had my last one - and the one the year before (also normal) - were both done when I wasn't on my period! That would be unlucky...
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
Anything that could be connected with a heart issue should always be checked out, but your dizzy spells are most likely nothing to worry about.  Many of us have them (I do to) when we rise too quickly.  While they might be disconcerting, they aren't dangerous unless we actually rise quickly enough to pass out and hurt ourselves.

It's not unusual to have the odd period now and then.  You can wait until next month to get the FSH and LH done.  They are important, but not life threatening or anything, so waiting a month won't hurt, but if it makes you nervous waiting and it's customary to go to the hospital for such things, you could do that, as well.
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Avatar universal
Thanks, my doctor is referring me for an ultrasound but yes, she believes it's a drop in blood pressure upon rising. But because of the family history including diabetes, angina, high blood pressure, high cholesterol and aortic aneurysm she thinks a heart problem needs to be ruled out.

Yes, the endo did say for me to get the FSH and LH done within 7 days of a period but I wasn't sure if I had a period this month because it was spotting and the bleeding was painless. I usually get pain with bleeding. Also my surgery is busy in terms of blood test dates so they couldn't fit me in for this time. My thyroid medication review is being done in 3 weeks' time and I know my period won't be then, so I'm wondering if I should drop in to the hospital and get the FSH and LH done. The endo said for me to get the FSH and LH done either this month or next month.
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
It does look like you needed your levo reduced after the August event but probably not as much as it was.

Your dizzy feelings sound like a sudden drop in blood pressure upon rising. Talk to your gp about that. In the mean time try rising more slowly and see if that helps.  

Didn't you say your endo said to get the FSH and LH done within 7 days of a period?
Helpful - 0
Avatar universal
Thanks for replying. Apologies, I forgot to include the August results for thyroid.

TSH – 0.08 (0.2-4.2)
Free T3 – 6.4 (3.9-6.7)
Free T4 – 23.6 (12-22)

I did have increased sweating and weight loss and tremor at the time.

Yes, I get the dizzy spells getting up after sitting down but they’re more severe when I’ve been resting for over half an hour.

I get symptoms when I eat gluten but I don’t know if it’s gluten intolerance. I get constipation that appears out of nowhere from eating gluten within 5-20 minutes.

The LH and FSH tests haven’t been done yet but I’m now on a period. Is this the best time for these to be done? Testosterone was done back in January and was normal: 0.7 (0.2-1.7)
Helpful - 0
649848 tn?1534633700
COMMUNITY LEADER
I'll try to hit your points down the line as well as I can...

Your endo, actually, sounds like a pretty reasonable doctor, compared to what we, typically see in U.K.  It's possible that the endo dept can only keep patients for a certain amount of time or until they get to a certain point in treatment, then have to be released to a gp... could have something to do with NHS guidelines.

I don't see a suppressed TSH in August; in fact, don't see any labs for August.  Suppressed TSH isn't the end of the world.  TSH is often suppressed when we're on replacement hormones and means nothing if we don't have hyper symptoms. My TSH has been suppressed (< 0.01) for the past 6.5 yrs.).  No, suppressed TSH has "nothing" whatsoever to do with Hashimoto's.

Presumably, the endo is asking the gp to report back to her or refer you back to her if your levels are not stable over the prescribed course of time.

She's probably right about the difficulty swallowing resolving itself once your levels are where you need them to be.  If your thyroid is swollen that will probably resolve when your levels are right and your body begins healing.

Not sure about the dizzy spells... depends on when they happen.  If you get them upon rising from a sitting/lying position, you may be changing position too quickly.  You wouldn't be checking your blood pressure at those times, so you wouldn't know exactly what it's doing. That happens to a lot of us and I agree that it's probably not thyroid related and would be something to take up with your gp, particularly if s/he's doing an EKG soon.

I agree that there's no scientific evidence to prove that going gluten free affects TPOab levels, so there's no reason to go gluten free unless one has celiac or is gluten intolerant.  Some people have found that weight loss is easier if they cut back on foods containing gluten, since many of them are the processed high carb foods, such as bread, cereals, etc.

Did you get the FSH and LH tests taken?  Because of the excess hair issue, was there any mention of a testosterone test?

I certainly agree that your thyroid hormone levels are hypo... Your FT4 is only at 29% of its range; rule of thumb is 50%.  Your FT3 is only at 14% of its range and rule of thumb is upper half to upper third of range.  You have a long way to go to get out of that hypo slump.

Additionally, your ferritin is still way too low in the range... ferritin needs to be quite high in the range.  There's some controversy over the actual number, but it needs to be at least 50 and some say as high as 80 to 90.  Ferritin is an iron storage hormone and iron is necessary for the conversion of FT4, which is a storage hormone and not used directly by the cells, to FT3, which is used directly by individual cells.  Too low iron will also cause some symptoms, such as fatigue, etc.

Looking at the percentages of your hormone levels, it's very possible that you have a conversion issue, but your FT4 is so low in the range, it's hard to tell.  Once your FT4 gets to the 50% level, your FT3 should start tracking it up and if it doesn't, we'd say you have a conversion issue and would need to add a T3 med.  

I'm guessing that what happened in August is that your levels started getting up to where you needed them, but that suppressed your TSH and your doctor panicked and started decreasing your med.  That happened to me, as well.  It had nothing to do with being hyper -- simply suppressed TSH, which is neither uncommon, nor dangerous unless you have hyper symptoms, which I did not.

The sheer numbers of antibodies is insignificant -- the simple fact that yours are elevated confirms that you have Hashimoto's.  The antibodies aren't causing your symptoms; the hypothyroidism resulting from destruction of your thyroid, by the antibodies, is causing your symptoms.  You can't stop the antibodies and it's not unusual for them to fluctuate.

I think your endo is on the right track; lets just hope your gp doesn't panic and lower your med, if your TSH drops again when your thyroid hormone levels start coming up to where you need them to be.  

As long as you have the option to go back to her, you should do fine.

Helpful - 0
Avatar universal
Sorry, Anti-TPO antibodies increased to 141 in August from 33.5 in March.

Forgot to mention: I did a saliva cortisol test. I will be sending it off next week.
Helpful - 0
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