It’s been a minute but now I’m five years out and still struggling.
My TSH is mid range and I am on 175 mcg6x a week and now 88 mcg on Sundays.
I feel this dose contradict my symptoms.
For the last few months I have been waking up with my heart racing, night sweats, headache and adrenaline rush. I have felt this before on 175 mcg but it feels like I have never fallen asleep. My eyes are absolutely beyond achy and my brain feels lethargic.
Has anyone experienced this or had correlation?
Sidebar, I had mono over a year ago and since my labs would be all over the place. I would be shown as extremely hypo when not feeling as such.
Tinnitus is still present from RAI, and positive that affects sleep. Not the sound but because I feel it affected a nerve.
Help??
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misscliocat
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Really need to see results for tsh, ft4 and Ft3 before we can comment. The symptoms you describe can be from over or undermedication so without results it is impossible to say much.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies or after Graves’ disease
Ask GP to test vitamin levels
Tinnitus is frequently linked to low B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Hi I have terrible tinnitus, constant and saw specialist, tests done, he said linked to brain in my case as I know if can differ for everyone, due to me feeling so unwell with hypo, stress tiredness, symptoms etc, it is more noticeable when I'm feeling exhausted. I have only just been dianosed after 6 years with hypo but I ignore tinnitus the best I can. I'm not b12 defincient never have been as I had many tests over the years as my mum died young of heart failure due to anermia, so they keep an eye on me. Hope this helps. I teach mindfulness and do lots of relaxation to help. Take care 🙏
I feel sympathy for those who've had their thyroid gland removed.
It's a big struggle, even if we still have a defunct thyroid gland.
The 'ideal' for finding the right dose is 'how we feel'. This means small increases up/down (particularly if we feel hyper). I had symptoms similar to yours when on levothyroxine but once T3 was added to a reduce T4 I improved immensley.
Now I take T3 alone and feel well. It is very unfortunate that the NHS has withdrawn T3 due to cost but I think that's because the majority of doctors are males who don't go through the ups/downs of cycles each month from about 12 years (or earlier) of age.
There are some compassionate doctors but, unfortunately, are prevented from using their skills and have to stick to the 'guidelines' whether they're good or bad or, most important, don't restore the patients' health. Some had their licences withdrawn.
I had severe palps when on levo but when T3 was added to T4, they resolved but I still felt unwell. I eventually went onto T3 only and because that doesn't have to be converted (from T4) the better I became.
Many on the forum recover on the original thyroid hormone replacement, made from pigs' thyroid glands and was prescribed since 1892 onwards, with no blood tests at all. Dose was slowly incresed according to the clinical symptoms the patient had - all doctors knew symptoms and the aim was to relieve all of them.
Unfortunately, if you're in the UK, the main Association made False Statements about NDT (natural dessicated thyrid hormones) used safely since 1892 and from then on patients' health recovered. They replaced NDT (contains T3, T2, T1 and calcitonin - made from animals' glands) with T4 only, i.e. and made False Statements about NDTs in order to get it withdrawn, without notice in the UK.
Despite Dr Lowe sending the following to the BTA et al, which they ignored despite Dr Lowe' sending a yearly reminder for the next three years. Dr L died through an accident but they never had the courtesy to respond to his communications. One cannot refute the truth.
"For the last few months I have been waking up with my heart racing, night sweats, headache and adrenaline rush."
I suffer from Hashimotos and get something similar, though only once or twice most weeks. I wake up very hot, pulse pounding in my ears and feeling rather unwell. One morning it was so loud I couldn't hear external sounds. The pounding decreases when I get up and move around a bit. Sometimes there's a headache and sometimes I wake from a more vivid dream than usual (not a nightmare).
I have wondered if it was an adrenaline rush. It's definitely not a panic attack. Apparently the adrenal glands try to compensate for the lack of thyroid hormone, so maybe they overdo it by exaggerating what naturally happens when you are waking up.
However, I don't think they can be HYPER symptoms because of still having some HYPO symptoms as well - tiredness, slowness and lethargy, and hair growing very slowly. Unlike you, I still have a thyroid, though it's likely to be a shrivelled little thing by now.
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