From invaluable advice given to me and other members, and articles referenced, I have gleaned the following:Autonomous nodules can be T3 secreting and take over thyroid function, a dying thyroid often makes more T3 than T4 in order to preserve levels, but this can't last. Also, can have central hypothyroidism where TSH can be low, normal or slightly raised and T4 will be low. You can be suffering from primary and central hypothyroidism at the same time. Central type can be due to genetic brain disease (and I have this on both sides of my family). I have a VUS for vascular disease of white matter in brain associated with a very rare leukodystrophy, written off to age(64), which I contend would have been there 30 years ago had I had a brain scan then. So, I believe central hypo is feasible, both by test results and family history. I had an auto immune attack on my thyroid end of June 2021, and a shattered tooth root removed 12/3/22. Endo has advised doctor I have a transient, temporary problem caused by non thyroid illness, and don't need the 25mcg levo teva I am currently taking. I stopped teva for 1 day and left side of neck with 2 abnormal, U2 nodules swelled like a football, and a left neck and shoulder strain/pulled muscle type problem appeared out of nowhere. ( Doctor spoke to today says this is not a thyroid symptom and not related). Disappeared on resumption of levo. Ill with m.e/chronic fatigue fatigue since 1987. Feb/Mar 2020: TSH 1.84 (0.27-4.2), T4 10.6 (12-22) Told abnormal, test T4 in 3 mths. I know this was a full thyroid panel with antibodies tested, and vitamins but was told ok apart from T4, which was described as borderline!
June 2020 TSH 2.75, no T4 done. Sent more blood . Lab didn't test as within 1 mth of last test. Shouted at by doctor and told nothing wrong with thyroid and don't ask for it to be tested again! Felt like death, and sleeping all the time. After dinner, sleeping 1 -1 and a half hours.
24th Feb 2022: Asked for thyroid to be checked. Told her sure I had an auto immune attack end of June 2021. TSH 4..02 (0.27-4.2), T4 5.5, (12-22), T3 6.5 (3.2-6.8). Phoned by doctor who said I had an underactive thyroid and started on 25mcg northstar teva on 8/3/22. Test taken at 12.10p.m.
11th April 2022, 12.10p.m. On levo since 8/3/22. Not fasted and taking biotin supplement and took levo that morning. No T4 done and Ukrainian locum said needed. TSH 2.08. (0.27- 4.2). Told to take another blood test but had to wait a month or lab wouldn't process. Told lab never does T4 or T3, even consultants are refused!
12th May 2022,12.10p.m. Took levo noon on previous day and fasted, water only, morning of test. No biotin in last 7 days. Reception wouldn't give me results as not reviewed by doctor, so made phone appointment today, 24/5/22. Different doctor that I know nothing about, and battle hardened. TSH 1.87 (0.27-4.2) and T4, drumroll, was 8.4 (12-22). I asked her to do the referral to E.N.T for nodules I paid to be scanned by ultrasound 4/5/22. Endo had advised locum that if nodules abnormal refer to E.N.T. Forum clarified for me E.N.T. will see if require surgery, nothing more. Up to doctor and/or endo to investigate and monitor. Asked new battle hardened doctor to refer nodules to E.N.T. and told her I need to be referred to Endocrinology. She said nodules should be referred to Endo. Explained not the case. Told her up to doctor and /or endo to do testing and monitoring. Told E.N.T. will automatically liase with e.n.t. as if nothing to do with g.p. now. Told her no this doesn't happen. Told I don't need levo and my T4 fine at 8.4. Disagreed with her. Told her totally understood reasoning of endo when said she thought thyroid problem transient, but she obviously must not be aware that T4 was 10.6 in Feb.2020, so was undiagnosed hypothyroid then. Said it was suggestive of central hypothyroidism, but that nodules could be autonomously T3 secreting and that it was possible to also have primary hypo at the same time. What did she think?
Apparently, I don't have a thyroid problem of any kind and don't need treatment, and did I have medical knowledge? Asked for referral to Endocrinology, though it sounded as if locum had had referral refused. She said had not been referred, so asked to be referred to have hypothalamus and pituitary hormones checked.
Fully expect referral to be refused as she says endo will be aware that T4 was 10.6 in 2020. I am not in Dundee but know that the waiting list for Endo there is 3 years!
Don't think she knows anything at all about thyroids, nodules or systems in place re. thyroids. It was a real eye opener for me to see from the forum that doctors seem to solely rely on what a lab says on the blood test results, and how clueless they are.
I am supposed to have a prescription waiting in the chemist marked Glenmark levothyroxine only, for 25 mcg which I had to get approved by the surgery pharmacist 19/5/22, but that she said a doctor would need to prescribe.
I have no chance whatsoever of talking a gp into an increase in dose from 25mcg and doubt very much I will even get any further prescriptions for levo. Locum was going to test bloods every 4-6 weeks, now no follow up or treatment. E.N.T will do anything necessary, as far as she is concerned, although she said it should be endocrinology, what did E.N.T. have to do with it? Told her I had made the same mistake, hence a referral had not yet been done. We didn't bond over this.
Am I going mad, that I believe I have a clear history of hypothyroidism as far as blood tests go? I really don't think it is okay to consistently test below range for T4??
It pains me to say that even at this stage, I feel I need to pay for an up to date thyroid test with vitamins from Medichecks, book on to the 5-6 week waiting list for the Scottish female Thyroid Uk approved endo who is NHS and private ,and not in my Health Board. It will be obvious to those with the list who I am talking about.
Thyroids are mega hard to understand. I would appreciate the views of other members on the forum about this.
Does anyone on the forum know if the Endo in question has experience of central hypothyroidism? Has anyone seen her and been transferred to her NHS list? To investigate pituitary hormones and hypothalamus would be expensive if privately done. I can get a zoom video appointment in 5-6 weeks, but I could maybe ???? be one of the lucky ones who could get benefit from a decent dose of levothyroxine.
Help!!!! Think I need to act now, as don't think I'll even be given blood tests now let alone levo.
Thyroid was tested 2014 when really , really ill. Felt like death. Asked for B12 to be tested as losing feeling in hand and arm and soles of feet. Diet full of B12 and daily multi vit with B12. 168 in range of 190-900. Said not pernicious anaemia when tested, but in family history. Large xantholasmas above and below both eyes. Cholesterol 6.5. Trialled statins for 3 mths to see if it would shift lumps, but only dropped to 6.1 and xanthalasmas getting worse. Told thyroid ok.
Thyroid checked 2004, told ok.
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