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Thyroid struggles. What dose are you on?

I've been suffering from Hahsimoto's for 10 years. Initially I was hyper. Then my thyroid started fluctuating and then it went fully hypo 3 years ago. 2.5 years ago I was put on desiccated thyroid after having horrible symptoms for 6-7 months (desiccated thyroid is the only thyroid medication I've ever been on). My doctor would check my values and up my medication every few months until eventually it seemed to stabilize 8 months later. 6 months after that my thyroid went out of whack again and my dose had to be upped. My levels were stable for about 6-7 months and then went hypo again. Does this ever stop? My dose was recently upped from 90 mg desiccated thyroid a day to 105 mg. What are the chances that this is my final dose?

Are you on Synthroid or desiccated thyroid? What dose (if you don't mind sharing)?

How long have you been on this dose? Is your thyroid stable?

Do you still have symptoms?

Are your tests normal?
4 Responses
Avatar universal
I am the opposite...been on synthroid since  radiation  ablation in the mid-90's.   I have been on the same dose  (112 mcg) ever since until the last  8 months.  Synthroid is not fast acting but is much easier to maintain consistent thyroid levels .  You tend not to have huge swings if you take it consistently each day.  I would be very reluctant to try anything else  at this point  but just my POV.  
5 Comments
Thank you Jasper1966. I've thought of switching, because my PCP told me exactly what you're saying. But the thing is that I had horrible heart related symptoms before I was put on medication and the NDT I'm on got rid the worst ones (also, my FT3 was low at the time, not my FT4).  I'm concerned that if Synthroid doesn't work for me those symptoms will be back.
Here is what I would do based on the limited information that I have:
1)  Get a full understanding  of why your dr . went with the  NDT and not Synthroid.
2) Is there a discernible medical disadvantage in using Synthroid,  if not, would  she/he consider  a switch/combination treatment plan given that your levels have not stabilized ; what are the pros and cons...
3) If your dr is not willing to explore other treatment options in the absence of a valid medical reason then seek a second opinion.

Doctors are human, they have individual biases, different tolerances or clinical backgrounds.  .If you are not getting results then get another opinion.   Good luck, I know it is frustrating given the duration.  
1)  Get a full understanding  of why your dr . went with the  NDT and not Synthroid.

My doctor tried to refer me to see an endocrinologist. But it was taking so long (over 6 months) and my symptoms were so bad that I ended up seeing a naturopath and doing a trial on the medication to see if it would work for the heart symptoms (and it did!). Where I live, naturopaths can't prescribe Synthroid but they can prescribe NDT.

2) Is there a discernible medical disadvantage in using Synthroid,  if not, would  she/he consider  a switch/combination treatment plan given that your levels have not stabilized ; what are the pros and cons...

My understanding (based on things people posted on here) is that Synthroid is only T4 and NDT is T4+T3+T1+T4.  Many Hashimoto's patients can't convert T4 to T3 because their thyroids are damaged. In such cases Synthroid doesn't work. My FT3 was low before I was put on NDT (my FT4 was not), so I may be one of those people.

3) If your dr is not willing to explore other treatment options in the absence of a valid medical reason then seek a second opinion.

They are. Both my PCP and ND asked me if I wanted to try it. But I'm afraid to switch because I know NDT eliminates my heart problems. I'm not sure Synthroid would and I really don't want to risk it.
If you have not seen an endocrinologist I would suggest that as a first  step.  The wait time is horrendous given the pandemic but schedule it and call weekly to see if there are any cancellations.      Do your research and make sure the endo has extensive thyroid background and not focused on diabetes.  If you feel better in 6 months then you can cancel the appointment.  
Thank you Jasper1966
649848 tn?1534633700
COMMUNITY LEADER
What are your current levels?  If you have recent labs (with reference ranges) to post, it would be helpful.

It's not unusual for levels to fluctuate over time or to need medication changes as the thyroid varies output as it "dies off".  You do have to be sure your doctor is basing your dosages on actual thyroid hormone levels and not just TSH.  There are a variety of things that affect TSH and make it fluctuate so trying to adjust medication on that basis is like trying to shoot a moving target.

Personally, I've been on quite a few different med(s)/dosages over the past 15 yrs.  Meds have included Synthroid, generic Levothyroxine, Tirosint, Levoxyl (all T4 meds), Cytomel, Liothyroinine (T3 meds), NatureThroid and I'm currently on Armour Thyroid.   Dosages have ranged from 50 mcg to 112 mcg of T4, 5-15 mcg of T3 and my current dose is 60 mg.  

There have been times during which I've felt "better", but I've never really felt "good" on any of the dosages.  My current dose of 60 mg is not enough and I've been supplementing it with extra T4.  

I do have other conditions such as Pernicious Anemia, adrenal adenomas, etc that contribute to symptoms, so I can't blame it all on thyroid.  However, my last test results showed, Free T4 below range and Free T3 very low in the range.  At that time, my dose of Armour was increased from 3/4 grain (45 mg) to the 1 grain (60 mg) I'm currently taking.  I'm due for blood work again next month, but judging from the way I feel, my levels will be normal, even though I still have symptoms.
3 Comments
Thank you Barb135. Here are my most recent test results (before my dose was upped from 90 mg to 105 mg):
TSH: 0.4 (0.3-4.3)
Free T4: 8.9L (9-19)
Free T3: 3.1 (2.9-5.6)

Symptoms:
Mild weight gain/moderately slow metabolism on a very healthy diet and with a lot of exercise
Sleepiness
Excessive sleep
Feeling cold all the time
Dry skin
Memory issues

The symptoms used to be a lot worse, so the medication is definitely working. But they're still there. My doctor upped my dose from 90 mg to 105 mg desiccated thyroid (60 mg in the morning, 45 mg in the afternoon) after the above tests.
Your symptoms are definitely those of being hypo.  

It's not unusual for those of us on desiccated hormones to have low Free T4 because the T3 in the desiccated med is much stronger than T4.  Many have to take an extra dose of T4 med, such as Levo, Synthroid, Levoxyl, etc in addition to the desiccated hormones.  

How long have you been on the new dose?  Since symptoms have improved, it's possible they will get even better after you've been on the dose a while longer.

Have you had Vitamin B-12 and/or Ferritin tested?  Vitamin B-12 deficiency causes horrible fatigue, sleepiness and excessive sleep.  Ferritin is the iron storage hormone and iron is necessary for converstion of Free T4 to Free T3, plus iron is necessary for healthy red blood cells that carry oxygen.  Low iron also causes fatigue.
Thank you Barb135.  I was on 90 mg for 8-9 months. My dose was upped to 105mg a few days ago (because of my symptoms and the test results). It's just that I feel like my dose has to be upped every 6-9 months and I really want to be more stable than this. I don't want to end up on 200 mg.

My B-12 always comes back high normal, so that's never been an issue for me. I take iron every day and have been for over a year now, so my iron and ferritin levels should be normal. I think it's been helping my body convert T4 to T3. My T4 used to be a lot higher than my T3, but that's not the case anymore.  
Avatar universal
Hello,
I was on 60 mg of Armour for 2 months, I have 112 lbs and I could tell you that 60 mg of Armour is not enough. Not even 90 mg of Armour was not enough. It gave me hyper symptoms because my free T3 was in the higher range but my free T 4 was in the lower range0.9 and the lower range is 0.8. I stayed on the 90 mg armour for 3 months and I felt bad. Then i added 25 mg levothyroxine generic i addition to 60 mg armour. Still after a month my Free t4 was 1.0 at this point i felt so hypothyroid. I could  not bear the fatigue and I ask my doctor to give me 88mg levothyroxine generic in addition to 60 mg armour. 10 days into it and I feel much better. I know that this dose might be too much but I just could not wait to be so fatigue...
1 Comments
Thank you marina26m . I'm glad the higher dose is working for you and that you feel better.

Personally I never felt hyper on thyroid medication. But my doctor has been increasing my dose very slowly in order to prevent potential hyper symptoms. Also, when my thyroid went hypo, my FT3 levels were borderline/low and my FT4 levels were not as bad (low-normal), so my body really needed that extra T3.
Avatar universal
I was on Levothyroxine 88 mg before Armour for 9 months I was ok but felt something  is missing..thats why I started on Armour....however armour you need to take at least 2 .5 grainsto take the level of Free T4 to a good level. But at this point free T3 could be so high that might cause other problems. So I dont know if is healthy  to be on that much Armour. Thats the way I think. When i made the transition from levothyroxine to armour i felt the best for a month until my free T4 reduced to almost nothing
4 Comments
Thank you marina26m . Have you considered adding a very low dose of Cytomel (T3) to Levothyroxine (T4) instead of Armour (T3+T4)? This way you'd be able to take as much T3 as your body needs.
Maybe if what I am doing now is not good I will try that too.  Thank you!
Per my comment above, many people have to take a separate dose of T4 medication along with desiccated hormones. because Free T4 tends to run lower with desiccated hormones.  
Why is it lower with desiccated hormones?
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