I have been taking levo for 9 years, my current dosage is 150mcg but I still don't feel better. Just wondering if it's time to come off them and look at what are causing my symptoms? Thank you for reading
TSH 4.31 (0.27 - 4.20)
Free T4 16.7 (12 - 22)
Free T3 3.3 (3.1 - 6.8)
You’re very undermedicated, that’s the problem! Don’t come off your levo - you actually need more. And if you’ve been undermedicated for a while (which you probably have, because many GPs don’t have a clue about how to optimally treat hypothyroidism) you’ll probably have low Vit B12, low Vit D, low folate and low ferritin, which will be compounding the issue.
Ask your doctor to test those additional vitamins and minerals and for an increase in dose.
Thank you, I supplement but what I take just doesn't help. I have been taking the 150mcg since November 2017. I am not having an increase because my levels are not following a pattern. My results above were done in April and I am still waiting on results done last week
Is that what the doctor said, that your levels “are not following a pattern”? Doesn’t sound like he/she knows what they’re doing... Well, when you get this next lot of results please do post them here for comment.
What are you supplementing with?
Thank you, I have B12 injections once every 3 weeks as a therapeutic treatment for low B12 symptoms. I had an IV iron done 2 weeks ago and I am due a retest for this in 2 weeks from now. Also taking vitamin D 800IU and this has been since 2014.
The GP and endocrinologist have both said they don't know why my TSH can go from 0.02 to over range within 2 months of testing if I have remained on the same dose.
Endo is probably a diabetes specialist - that’s very common these days. It happens all the time - you probably have autoimmune hypothyroidism (Hashimoto’s) and that can cause fluctuating levels of TSH. Scary that “endos” don’t know the first thing about this stuff, isn’t it?
Your levels must have been very low for the infusion to be needed, so it’s great you’ve had that. Ditto on the B12 jabs. Well done that GP. But 800iu of Vit D daily won’t raise Vit D levels in a month of Sundays. 3,000-5,000iu daily would raise your levels (if they’re still low, which they almost certainly are). Have they been tested again?
Thanks, they were tested back in April 2018, the vitamins and minerals. I also briefly took magnesium and selenium too. I can post the April ones but vitamin D is due this month and ferritin due in 2 weeks time.
I believe I have Hashimotos, both my antibodies are raised.
Thyroid peroxidase antibodies 304.5 (0 - 34)
Thyroglobulin antibodies 485 (0 - 115 negative)
Yes, that’s Hashimoto’s. 
TSH is never a particularly helpful test to go by once you’re diagnosed. Far more important to see whether your FT3 is high enough in its range—it shows whether you’re able to convert enough T4 to T3. When FT3 is low, we hypothyroid folk can feel dreadful, never mind what the TSH says.
Thanks Jazzw. I am due a chat with my endocrinologist this week to talk about how I've been feeling. I have no idea when he is due back in clinic but I called the department on the Thursday and have been waiting since then to find out what my thyroid levels are. The hospital lab only checks TSH or sometimes FT4 but never FT3. But my GP practice tests FT3 with TSH and FT4 and I have been going through them instead for thyroid testing. I probably sound like I am being noncompliant in not following the endocrinologist but if I don't get the full picture on what my thyroid is doing how would I know if I am optimally dosed by just going by TSH and FT4?
You can go by whether or not your are symptomatic or free of all symptoms. The aim is symptom-free and we need a good FT4 and FT3 to do so.
Endocrinologists are usually diabetes experts rather than hypo and think if TSH and T4 are in range everything's fine. It is not if TSH is above 1 and FT4 and FT3 not near the top of the ranges.
Vitamin D in December 2017
25 OH HYDROXY VITAMIN D2 6.2
25 OH HYDROXY VITAMIN D3 56.0
TOTAL 25 OH VITAMIN D 62.2
(<25 severe vitamin D deficiency. Patient may need pharmacological preparations
25 - 50 vitamin D deficiency. Supplementation is indicated
50 - 75 vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated
>75 adequate vitamin D)
Ferritin pre-infusion in April 2018, iron panel and complete blood count both showed iron anaemia
FERRITIN 23 (30 - 400)
Folate April 2018
FOLATE 2.38 (2.50 - 19.50)
Vitamin B12 before B12 injections started in September 2017
VITAMIN B12 236 (190 - 900)
I was prescribed 800IU vit D but I changed it to 1000IU in March 2015
Also I have been sweating a lot and I know it's hot weather but this is making me think I am overmedicated. I have been drinking a lot of water but this doesn't stop the sweating and I am actually getting all the more constipated as well.
No, sweating can be a low thyroid symptom too, and also a symptom of low Vit D. Those results from April definitely show you to be undertreated for hypothyroidism.
Vitamin D in December 2017
25 OH HYDROXY VITAMIN D2 6.2
25 OH HYDROXY VITAMIN D3 56.0
TOTAL 25 OH VITAMIN D 62.2
(<25 severe vitamin D deficiency. Patient may need pharmacological preparations
25 - 50 vitamin D deficiency. Supplementation is indicated
50 - 75 vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated
>75 adequate vitamin D)
Is it ok to add more vit D? I take 3000IU
I wouls think you could increase the Vit d3, yes, as its obviously not working or you are not absorbing, also read up about taking vit k2 mk7 to help direct any calcium to the bones and teeth and also look at taking magnisium too, both these work with vit d. you won't feel better until this is up along with all your other deficiencies, this could be one reason your thyroid levels are still out of wack.
Sounds to me like someone has been letting you drift along without a complete thyroid workup including vitamin levels. The adminstrators and others on this site have a lot of knowledge and experience and can list the tests you need better than me so I will leave it to them. But, in my opinion, you have been receiving less than optimal thyroid care. When you find what is needed from this site tell-don't ask-your doctor what you expect from treatment and if it is not forthcoming, please consider finding care elsewhere. Yours is a common road many of us have been down. It is difficult sometimes to find a good thyroid doctor but when you're getting the meds and supplements you need it's possible to feel well. Nine years is a long time to feel sick. You deserve better. Take care. irina
Thank you, I have vitamins from April 2018 but though I had IV iron done 2 weeks ago all it did was make me more tired and I am still making mistakes. I am under a thyroid doctor but I am going to try and ask him something else before I give up with him. He is the one who has said he does not understand my TSH going below range to above range with no change in dose and this happened within 2 months.
I had been receiving suboptimal care for a long time. That changed in early April with a change in doctors. He has me on a 'feel batter'path and as my TSH was bouncing around he suggested switching my levothyroxine from generic to brand Synthroid. All generics are not created equal as FDA laws allow them a margin of error re matching their dosages exactly to Synthroid. Believe it or not this made a significant positive difference for me. Worth asking your doctor about.
Thank you irina
You're welcome. There are other reasons for 'bouncy' TSH's but this suggestion has helped me.My new endo also did a complete workup, found I needed T3, an extremely low Vit D level and all these problems are now improving with correct care and I am slowly feeling better. I hope you find the same care and stop feeling so bad. Take care. irina
You and JazzW have been so helpful, thanks xx
Just one more thought. You're on 150mcg of levothyroxine and your TSH is still a little high, however, 150mcg is quite a goodly dose so, along with your low vitamins profile it does make me wonder whether you have some absorption problems. Has your GP ruled out coeliac disease? Have you seen a gastroenterologist?
If coeliac disease has been ruled out, have you considered going gluten free anyway? SlowDragon has links and good advice about this as many find they are gluten intolerant even if not coeliac and gluten can exacerbate the antibodies activity. If you search her posts to other people you will find the links.
Thank you, I have never had coeliac disease ruled out. I have never seen a gastroenterologist either. One GP said going gluten free might help but I thought I should be checked for coeliac first just to put my mind at rest.
The GP first said about being tested for coeliac back in 2015 but I was suffering from anorexia at the time and unable to do the gluten challenge for the coeliac screen. Now that I am eating better and have gained more weight I feel more able to go ahead with the gluten challenge.
No wonde you're very symptomatic. T3 bottom of range, T4 not optimum and TSH far too high for someone taking thyroid hormone replacements.
Researchers - quite a number of them - have found that many hypothyroid patients feel much better with a combination of T3/T4. Unfortunately in the UK they've withdrawn T3 from prescribing at present (we have a case going forward for those who need it to feel better to get it reinstated).
Many members have sourced their own T3 and improved their health. If you wish to add T3 you'd have to put up a fresh post requesting information of where to source it and you will be sent private messages and post will be closed for info on the forum.
Your doctor is 'happy and content' that your TSH is in range and that's why you've not had an increase in levo.
Levothyroxine (T4) is an inactive hormone and it has to convert to T3. T3 is needed in our millions of T3 receptor cells and is the only Active hormone which relieves symptoms. I doubt doctors know anything about T3 at all. Just the TSH and T4.
You need a TSH of 1 or lower with a Free T4 and Free T3 near the upper part of the ranges.
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