Hello everyone, I’m new to the site and I cannot thank you enough....I’ve learnt more in a week than the 25 years since being diagnosed with an over active thyroid.
After being diagnosed with depression and paying to see a counsellor, who at the first appointment suggested I have a thyroid function test I’ve been on 250mg Levothyroxine. Over the last three years I’ve felt so tired, lost my voice completely for 4 months, constant swollen glands, chronic fatigue and a throat that is so sore and feels as if there is an obstruction causing me to constantly clear my throat (it’s been really bad like that for at least 6 months).
About 18 months ago yet another Dr (I never see the same one) decided to treat my symptoms with the addition of anti depressants, despite my insistence that I didn’t feel depressed I as I was told my TSH was normal.
In early August I had a medication review and was told to reduce the thyroxine to 150mg, no explanation whatsoever - I was concerned about the sudden decrease but did as I was told.
Lately i got to a point, not because of the throat/glands, not because of the fatigue but because I’m a shadow of myself, struggling to function day to day mentally. Using one of of the labs on the site I’ve had my bloods done. I’ve started taking folic acid (today)
I was told yesterday by the Dr that they needed a NHS blood test and I’ve insisted the test included the antibodies. I also asked for the last TSH result which was 0.01
I’m off on holiday for a week, should I carry on with my 150mg or an I making things worse and stop taking it until my next Dr appt on 8 Oct
Apologies for the rather long message, any advice gratefully appreciated.
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CybillPuppins
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Could you edit your post to give us the ranges for each test please? It does appear that your levels of t3 and t4 are low, but ranges will clarify this. Don’t even think about stopping your levothyroxine! You would become very unwell.
Others will comment on your ferritin etc, but this looks way too low as well.
I am no doctor, but I do know how you feel. I am hypothyroid, and when my THS is too high, I have depression. It gets really bad. But, my Dr. raised my Levo, and I feel in control of my mind again. It makes all the difference. I noticed your TSH is low. I wonder if you need the higher dose of Thyroxine. I know this might not be the cure all fix, but it might help.
When you feel low about yourself, just remember you have people out there that totally understand and wish the very best for you!
You are under medicated, very low vitamins as result and antibodies are so near upper limit almost certainly you have Hashimoto's
TSH is NOT a good indication of adequate dose when on Levothyroxine. We often have suppressed TSH on Levothyroxine. Most important is FT4 and FT3. Both of these are far too low.
FT4 should be near top of range and FT3 at least half way in range at 5 or 5.5
Vitamin D is too low. Aiming to improve to around 100nmol.
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 2000iu for 2-3 months and retest. It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Ferritin is very low. Ask GP for full iron panel to test for Anaemia
Eating liver or liver pate once a week should help improve ferritin
Only make one change or add one supplement at a time and wait at least ten days to assess benefit
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Apologies for the delay in reply, we're in Cornwall enjoying the sunshine with very limited internet access, I've had a quick read, of the responses and will be able to have a good read and digest once back home at the weekend in preparation for my docs appointment on Monday at 11. I can't thank this site, or the responses I've cannot believe this has gone on for sooooooo long.
Am wondering how you take your Levo ?- do you wait an hour before eating or drinking ? Just thinking as you are on a reasonable dose that something is affecting the absorption. Any other meds or supps ?
Thank you Marz for the respnse.. in answer to your question I take all the tablets together in the morning, including HRT and vits. We I did until 2 days ago anyway, now I take my Levo at bedtime, my hrt in the morning and vits at lunchtime :o) You'd think the Dr would have mentioned this minor details grrrrrrrrrrrrrrrrrrr
Presumably you had Graves in past and RAI or thyroidectomy
When you come back from holiday
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI
Thank you SlowDragon for the informative response - as far as I've been told the only issue with my thyroid is and always has been an under active thyroid. No thyroidectomy, Graves or RAI (which I had to google). Drs appointment on Monday, this girls is going to be armed with info....I'd best talk fast as that 10 mins appointment is going to wizz by.
I cannot thank this site enough, I feel better just knowing that I'm not just weak/lazy with a constant soar throat, to name but a few of the symptoms I've been living with for the past few years, if i'm honest it's about 10 years which makes me feel so sad...but onwards and upwards :o)
But if your thyroid was HYPERTHYROID, you must have had thyroid zapped by RAI, or Thyroidectomy to subsequently been put on Levothyroxine
Hyperthyroidism doesn't spontaneously go Hypothyroid. It does sometime just go back to euthyroid.
HOWEVER Hashimoto's (autoimmune Hypothyroid thyroid disease) can start with initial hyperthyroid phase as thyroid glad is attacked and dumps large amount of thyroid hormones in blood stream. Slowly this then becomes hypothyroid as thyroid gland is increasingly destroyed
Essential to test both TPO and TG thyroid antibodies for autoimmune thyroid disease (Hashimoto's)
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Hashimoto's very often affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working . Obviously your vitamin levels are low.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first, to rule it out. The majority with Hashimoto's are gluten intolerant not coeliac
Don't expect GP to know any of this, the current training on autoimmune thyroid disease is woefully inadequate. Hence such a vast number of people on this forum
Have you been tested for celiac disease ? I had many of the same symptoms until I was diagnosed. Came off gluten and life has changed dramatically. Also found a new Dr who ran the compete tests and immediately raised my dose from 112 to 150.
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