Hello. It’s been a while since I’ve posted but background is I have unmedicated Hashimotos and have been feeling extra exhausted recently and now on painkillers for my painful thyroid gland (which is also multi nodular). My gland now feels very swollen to the point I’m getting jaw and ear ache and tender glands. I am also getting itching and urticaria on my thyroid gland !
These are my recent finger prick blood tests which I have been told are normal (except for my TPO antibodies which were a bit over range).
FT3: 3.5 (3.1 - 6.8)
FT4: 13.2. (12 - 22)
TSH: 1.84 (0.27 - 4.2)
I am so sick of being told everything is ‘normal’ and I can’t receive any medication (although once my FT3 went below normal and they nearly prescribed but changed their minds). I also have a heart arrhythmia and I don’t think my thyroid is helping this at all.
Before I go off to the GP please can someone say if they think I have a case here for low thyroid hormones and need to be seen (and heard!). I personally think my FTs are far too low and far from normal. Many thanks.
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Elsa1509
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It is not normal to have low normal fT3 AND fT4 with a non-elevated TSH. TSH can be a useful indicator of early thyroid failure because it rises rapidly as fT4 falls.
TSH is not a single molecule but a group of 'isoforms' with varying bioactivity. A TSH around 2.0 should be enough to stimulate normal (i.e. average) levels of fT3 and fT4. Or, if the thyroid is failing TSH should be quite high with these fT3, fT4 levels. Your results show that your pituitary is not producing enough bioactive TSH but try telling an endocrinologist that. TSH, fT3 and fT4 are interlinked but doctors insist on treating them as independent.
I've seen around 100 similar posts to yours on the forums and they all have quite severe hypothyroidism. It is very difficult to persuade a doctor to treat this form of hypothyroidism, all I can suggest is that you push very hard.
Thank you so much jimh111 for your response and helpful insight. It has motivated me even more to fight my corner now. It’s really not good that people have to carry on with so many obvious symptoms of hypothyroidism (I only listed a few of mine !) and then risk some of the subsequent other health problems it can cause in the long run. I really appreciate your information, thank you.
I honestly can not remember my exact labs before my thyroidectomy. But I read similar. My thyroidectomy was due to size and placement of two of my nodules that led to breathing and swallowing/choking issues, over time.
I was content to continue to biopsy and scan.
But the endocrinologist asked me to raise my arms above my head & lower my chin. I could not breathe and any words I got out on instruction sounded like the devil. And the same summer, despite being a strong swimme,r I almost drowned. Within mere minutes of jumping off a boat.
So the time had come.
But with "normal" labs out came a diseased thyroid. The pathology and surgeon explained many abnormalities. And the surgeon called it extremely diseased. Lymphocytic thyroiditis was listed. So surprise. My endocrinologist went against the surgeon and the pathology verbally to me and said it was probably just aging. Ie. No big deal.
I am not old.
So frustrating how they could know so little. (I did take glandulars for a while before surgery - I knew something might be up as they cleared up crazy scaly forearms that no one knew what to make about) One of the popular YouTube doctors - Edberg? - has a video that talks about a certain lower TSH level is often thought of as normal or heading toward hyperthyroid. But it can often hide a certain kind of hypothyroidism.
I probably should not even write that last paragraph as I have no clue what he is actually talking about. But after my surgeon said she was 100% certain that it was a completely diseased thyroid on arrival, I remembered those words about that specific range of TSH. Science obviously needs to catch up..
Thanks so much Litatamon for your reply and it was so interesting reading about what you have been through and firstly, I am so sorry for what you have been through (!) but equally it was so fascinating about your diseased gland. I don’t think mine is as bad but I’m sure it’s not good either (I know ji had 4 nodules and a cyst years ago). May I ask what medication you were prescribed after your Thyroidectomy? I will try and find that person you mentioned on uTube! I really appreciate your reply and it’s so interesting reading other people’s stories and journeys!
I find it fascinating too. And no worries I did not want a thyroidectomy but I was honestly happy to be in the operating room at that point. I fully understand many regret their thyroidectomy, I do not.
My hormone replacement has not been smooth. Still hoping though.
Synthroid only for first six months. Labs not normal until I got to 225 mcg. But I had an awful time when my endocrinologist went from 112 mcg to 200 mcg in one go. Could hardly function through a day. No one would let me off those meds, so I sourced NDT. Felt instantly better but labs were awful - TSH at 32.
It was my absolute intent to keep going on NDT, but my second batch is nowhere to be found, showing with customs here with no letter sent.
.
So coincidentally, I got a new endocrinologist at the very same time and he offered me Cytomel (or prescribed NDT) I almost fainted! Insert smile. So I just started on combination therapy and we shall see. On 25 mcg of generic lliothyronine & 112 mcg of Synthroid.
It is crazy stressful to find the money (not in UK), I preferred sourcing the NDT abroad - paying in one shot and covered for four to five months.
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Monitor and try the arms up, chin slowly down to chest and see if you feel any breathing or speaking issues. You should not feel any major adverse outcome if your goitre is not restricting you at this point. (Well besides the physical issues that you already experience from it. )
Wow, you’ve really been through it but it sounds like you’re on track now and that’s brilliant you’ve found a source of Cytomel as well - sometimes Levo isn’t enough which I’ve ascertained on this forum. I tried that chin exercise and I just feel a sense is swelling and fullness below my jaw line and in my glands (more so on the right where I’m pretty sure my biggest nodule is (1.5cm 8 years ago).
Anyway, take care and thanks for all your time and information! I hope you hope to continue to do well on your thyroid journey.
The pituitary produces TSH and other hormones. It can fail and cause secondary hypothyroidism which usually presents with a very low TSH and low fT3, fT4.
Also, the axis can become downregulated, usually as a result of having too much thyroid hormone for quite some time. This can happen if someone is taking high doses of thyroid hormone, if the thyroid is faulty and secretes too much or in Graves' where the antibodies stimulate the thyroid to over-secrete.
Sometimes the pituitary recovers, sometimes it doesn't. Technically, only the 'thyrotroph' is affected, the bit of the pituitary that produces TSH, other pituitary hormones are OK.
Other things such as severe depression, strict dieting or serious can also cause insufficient TSH secretion.
TSH is not a single molecule but a group of 'isoforms' which have varying bioactivity - different potencies if you like. Often in these patients the TSH seems to have reduced bioactivity. I deduce this because they may have a TSH of e.g. 0.8 with low or low normal fT3 and fT4. In healthy people a TSH of 0.8 would be associated with average fT3, fT4.
There isn't a reliable way of recovering a downregulated axis other than trying to keep thyroid hormone levels not too high. This is difficult because such patients usually need higher hormone levels, especially T3.
That’s interesting Litatamon and I can’t think of any other plausible explanation for my jaw and ear symptoms. I am sure my thyroid gland is more swollen some days than others and this correlates with worse hypo symptoms including the jaw and ear involvement. It’s interesting to see what Jimh111 wrote as well ! Although I have high TPO and TgB antibodies I am slightly underweight and always being told I don’t eat enough ! I don’t have a big appetite and recently I tried to give up dairy and my thyroid symptoms got a lot worse !! Back on it now so dairy seems to work for me. Thank you for letting me know about your jaw and ears - very interesting!
May I ask whether you have been able to get medication? I’m in the same situation where I have Hashimoto with my TSH being relatively low at 1.5 so considered “normal” or within range but my FT3 (3.7) and FT4 (15) are low. I can’t get treatment because everything is within range but I have loads of hypothyroid symptoms and as time goes by new ones are developing but my TSH always seems to sit at the same level. Did you have any success or try anything to help yourself?
I keep being told to just wait and see what happens but it could take years for my levels to get bad enough to finally get treated. Other than giving up gluten and dairy and keeping my vitamin and mineral levels optimised I don’t know what to do! Appreciate any advice, thanks!
Hi TiggyWi. I’m sorry to hear you are going through something similar and I can say that I’ve temporarily given up trying to be heard or get any medication and just trying my best with diet etc. I am gluten free which does really seem to help and have cut right down on carbs which has really helped with blood sugar levels and energy, I have good and bad days so sometimes I wonder if this is just the norm for me with my thyroid levels as some days I feel fine with lots of energy. I do hope you can get somewhere with the doctors and I wish you well.
Thank you for getting back to me. I keep trying to find a way to get treated but it seems like the only thing to do is wait for my thyroid levels to deteriorate which feels so counterintuitive! I guess the only thing to do is try to keep on a healthy diet and hope for the best!
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