Hi everyone, new to the forum and would love some help/advise
I was diagnosed with underactive thyroid October 23, original levels were
tsh 22 (0.27-4.2)
t3 4.8 (3.1-6.8)
t4 9 (12-22)
tpo- 9.3 (0-34)
tgab - 456 (0-115)
I was put onto 75mg of Levo. as you can see I didn't have raised levels of TPO but my thyroglobulin antibodies were raised.
previous to be underactive I had a nasty period of symptoms that were catastrophic....
symptoms included panic attacks, hives, anxiety, insomnia, palpitations, heat tolerance... it was an incredibly frightening time of my life where I felt completely out of control of my body. after lots of research I now believe I was in a HYPERthyroid state before going under active.
ive cut out gluten, dairy and mostly processed foods. . . ive also been supplementing with 3000iu vitamin D as my blood tests came back low, this has also improved my b12 and ferritin levels. I also have managed to lose 2 stone in weight.
over the course of the last year ive had bouts of anxiety and feelings of being overactive again (albeit much less frightening)... so the doctors have been reducing my levo.
ive gone from being on 75mg to now just 25mg.
I had my bloods privately taken again in when I was reduced to 50mg July 24 ... results where
tsh - 3.11 (0.27-4.20)
t3- 5 (3.1-6.8) t4- 15.7 (12-22)
tpo - 16.7 (0-34)
tgab - 253 (0-115)
then I had my bloods done again recently (privately ) January 25 whilst being on just 25mg
results as follows
tsh- 2.27 (0.27-4.20)
t4- 13.9 (12-22)
t3- 4.8 (3.1-6.8)
tpo- 13.2 (0-34)
tgab- 36.5 (0-115)
as you can see im not optimal but im still in range and my tgab antibodies have gone down significantly. I feel like going up in dose brings on insomnia, jitters, heat intolerance and anxiety.
I feel like im going through phases of feeling tired and achy but then feeling great but then having periods of also feeling anxious, jittery and intolerant to heat...
I don't know if I need my meds upped or lowered im completely confused and I hate feeling like this, my sister mentioned something called dequirveins thyroiditis? a type of thyroid issue that is brought on my a virus or similar which can cause a period of being overactive, then moving into underactive and then eventual euthyroid (back to normal) this can take up to 4 years.
could I be going through this ? I could really use some expert advise on this as to wether I should be trialling no medication at all? my Gp's are useless as they don't know much about it and only care about what my tsh looks like.
is it unusual for antibodies to go back to normal levels ?
is it unusual not to have high tpo?
has anyone experienced dequirveins?
any help would be a appreciated xx
lara
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thepanicpigeon
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There is pain in the anterior neck and fever. Neck pain characteristically shifts from side to side and may settle in one area, frequently radiating to the jaw and ears. It is often confused with dental pain, pharyngitis, or otitis and is aggravated by swallowing or turning of the head. Symptoms of hyperthyroidism are common early in the disease because of hormone release from the disrupted follicles. There is more lassitude and prostration than in other thyroid disorders.
On physical examination, the thyroid is asymmetrically enlarged, firm, and tender.
Diagnosis of Subacute Thyroiditis
History and physical examination
Free thyroxine (T4) and thyroid-stimulating hormone (TSH) levels
Erythrocyte sedimentation rate (ESR)
Radioactive iodine uptake
Diagnosis is primarily clinical, based on finding an enlarged, tender thyroid in patients with the appropriate clinical history. Thyroid testing with TSH and at least a free T4 measurement is usually also done. Radioactive iodine uptake can be done to confirm the diagnosis.
Laboratory findings early in the disease include an increase in free T4 and triiodothyronine (T3), a marked decrease in TSH, a low thyroid radioactive iodine uptake (often 0), and a high ESR. After several weeks, the thyroid is depleted of T4 and T3 stores, and transient hypothyroidism develops accompanied by a decrease in free T4 and T3, a rise in TSH, and recovery of thyroid radioactive iodine uptake. Weakly positive thyroid antibodies may be present.
Measurement of free T4, T3, and TSH at 2- to 4-week intervals identifies the stages of the disease.
When the diagnosis is uncertain, fine-needle aspiration biopsy is useful.
Thyroid ultrasonography with color Doppler shows multiple irregular sonolucent areas and reduced blood flow in contrast with the increased flow of Graves disease."
after doing some research apparently not everyone presents with painful thyroid gland itself but can mimic a throat infection/ cold at times with feelings of swollen glands but not always. the virus itself can apparently happen many weeks before you start developing symptoms. and I did suffer a nasty virus (actually ended up with pneumonia) in the December before developing overactive symptoms in the February.
obviously not saying that's what it is as it could be completely unrelated... im only going by transcripts and case studies ive read... im just trying to figure out why my levels are staying somewhat normal and antibodies reducing significantly even after lowering my dose so much.
I don't know where to go from here, ive booked another blood test as I was advised to check again every 6 weeks to see what the difference is but if levels are somewhat normal again after this next blood test do I trial no levo at all ?
some thoughts . not necessarily in the right order ...
TGab can be raised for other reasons than autoimmune thyroid disease, (can't remember what sorry but this is why NHS usually use TPOab for diagnosing autoimmune hypo) so them going back into range now ....hard to be certain what that shows.
when it's just a temporary issue , like de quervains , or variation of it ,(or any other temporary cause eg. post partum thyroiditis) then once someone has started levo , the only way to know if their thyroid is now going to be ok without levo, is to stop Levo for a while .... probably for at least 2/3 mths to allow the HPT axis to get its act together and settle down ......then see how that feels , and re-asses tsh/ ft4 / ft3
i don't think there is any other way to be sure if a 'temporary hypothyroid' problem has become permanent .
getting a thyroid ultrasound may be enlightening perhaps ? , but it might not, and you'd probably have to pay for that privately. £100-150 ish
if i was in your shoes and had reduced dose for the reasons you have , then i would want to have a try without levo ( assuming next results on 25mcg look similar ), because even if it turned out that i went properly hypo without it and needed to restart, at least it would have removed the doubt that i needed it.
yes. think that's what ill do after this net blood test. obviously if my results are worsening already with this next blood test then we know I need the levo. but like you said, if they are similar/ the same then perhaps under GP guidance ill trial without for a period of time and monitor closely x
just make sure you and GP are on same page about it being a trial , if you are in any doubt at all about them being willing to restart if you feel worse without it ,personally i'd just do it by myself and test privately.
we have had a members with sub acute / dequervains thyroiditis fairly recently , but can't remember who it was of top of my head , or if they are still here, but anyway , you may find something helpful here :
Your initial diagnosis definitely suggests an under-active thyroid, even though your antibodies were only slightly raised. Your TSH was 22, which is very high, signalling your thyroid to produce more thyroid hormones, yet your thyroid only managed to produce a little bit of T3 and your T4 was under range. This is not a response from a normal or healthy thyroid and it was correct that you were put on replacement therapy.
It is strange though that they put you on 75mcg levothyroxine immediately (but probably a panic reaction as your TSH was high and the T4 under range), the normal starting point is 50mcg, some only start with 25mcg.
At any point, have they tested your folate, Vitamin B12, Vitamin D or iron? These nutrients are often low in patients with an underactive thyroid and if those are low, you cannot make the most of your medication. In addition, many patients have reported that they do not tolerate thyroid hormones very well, if their nutrients are low.
I think the 75mcg were a bit of a shock to your system and this is why you may have had the feeling of over-replacement, as your body had been deprived of hormones and all over sudden you have been given a huge dose to deal with. Your last results on 25mcg suggest that you are still very much under replaced (hence the raised TSH and your T4 is only 19% through the range) and interestingly feeling over-replaced and under-replacement can feel very similar.
At the start of your thyroid journey, there can be bouts of thyroiditis and the thyroid can kick in and dump thyroid hormones into your system, this is why you can feel great and when its over you fall down in the dumps again. Over long this will stop and you will end up having to replace your hormones, as I do not see how you could function without. I would definitely not stop levothyroxine, as you will end up where you were or worse.
If I was you, I would privately test iron, folate, Vitamin D and Vitamin B12 and work to increase these, if they are deficient, as they help processing your levothyroxine. Your T3 is 45% through the range (most people need at least 50 or 60%), which is probably helping you at present, but this will not continue for long, therefore you will have to draw this from your T4 store (which is still very low at present!).
I would actually try to go up on your levothyroxine and make it work by optimising your nutrients. You may soon notice that you can tolerate your medicine much better.
Thank you. Yes I have my testing done with medichecks so all of my vitamins etc are tested each time.
As per my post I was low on vitamin D and I now supplement with 3000iu and that brought my vitamin d up along with my b12.
I tried supplementing with b12 and it made me very ill. (Tried twice different brands without fillers and still didn’t have a good reaction)
I spoke to a nutritionist who told me to stick with the vitamin D and I should find my others improving as it’s the vitamin D that helps to absorb the nutrients like b12 etc from food. So I’ve been supplementing vitamin D for a year now and all my levels have improved significantly.
I have heard symptoms of over medication and under can be similar but I cannot stand the thought of being over medicated, when I was over active it was an incredibly dark time for me and I never want to go back there. So I don’t want to be increasing my medication unless certain.
When I was diagnosed hypothyroid I had none of the symptoms suggested.
No fatigue/ aches/ hair loss/ dry skin etc I had no issues really. It was when I was over active that I noticed the most awful symptoms.
I’ll see what my next blood test comes back with and make a plan from there as to wether I go up a dose.
As for starting me on 75 it was to do with my weight I believe. Interestingly, as soon as I was started on the Levo it brought on all the symptoms. I was missing like the fatigue and the bodyaches and the hair loss.. I was on 75 mg for almost a year until I had to start dropping down
I completely understand that you don't want to go back to the feeling of over medication.
It is difficult to know what to suggest, perhaps worth including a Vitamin B complex that contains Vitamin B12 and other B vitamins that are essential (as they need to be balanced as well - Thorne B complex or Igennus Super B complex are often recommended here), if a single B12 vitamin supplement does not agree with you, or if you cannot tolerate this either, you could increase your intake of red meat, liver, and seafood in your diet to increase your Vitamin B12 through food.
If you are reluctant to go higher on the levothyroxine at the moment, maybe continue improving your nutrients and when these are in a better place perhaps try to increase your levo by just adding an extra 25mcg every other day and see how you tolerate this. Maybe going slowly will be better and give you a more gradual increase.
Some people also notice differences with different brands of levothyroxine (as they have different excipients), so it is usually good to stick to the same brand. If you thing that one brand gives you problems, you could try another one. Interestingly, the TEVA brand of levothyroxine does not agree with many people, even though it is lactose free - but it is very much trial and error to find what is best for us. I do hope you find a way forward, don't give up, sometimes even small changes can have a quite a big impact.
Yes I cannot tolerate the Teva brand at all. I believe it’s due to the manitol in it.
I also insure I have the same brand now wockhardt seems to suite me well.
I’ve tried a few brands of b12 and b complex’s and they really just don’t get on with me so I’m doing my best to up it in my diet.
I do feel much better being lactose and gluten free though.
I think you have a good idea there with a really gradual increase of 25mg every other day. I think once these blood tests are back I’ll give it a go xx
Sounds to me like so-called ‘subclinical’ hypothyroidism and this is ‘flares’ caused by the thyroid alternately pumping out too few and too many hormones. I went through this for years, even having spells when I was remarkably ok.
Thyroid makes a huge liar of one’s self. Whilst all this is going on - you just don’t know what’s going on!
As to the medication angle. Well even the tiniest bit of understanding from the medical community would be useful.
Ooh thepanicpigeon. It’s a long story but basically I trusted my GPs. I trusted my cardiologist. Frankly I am infuriated when I give it air. Twenty five years ago I was diagnosed with a condition called ‘coronary spasm’. It got this simple name because it had never been named. Men do get it but as usual because far more sufferers are probably women, it likely did not get the attention it should. Lots of tests, no plaque. Everything working in the heart except for painful episodes etc etc. When I joined the Forum I dug up an original thyroid test result. It showed ‘subclinical’. I was not even notified, so I doubt any medic knew enough to raise it. Indeed if I was in the same position today, with the same readings it would also be ignored. NICE guidelines are a travesty. There is just enough room in there for a good medic to comprehend and help patients in this situation. Good luck finding a good medic. However they would rather leave well alone it seems. Utter laziness on the part of the medic. Just leave the patient to get on with it. Get them out of my office. When it’s bad enough they will be back and I will probably have moved on. No accountability etc etc.
Anyway upshot now is I do have serious blockages in my heart. It’s a case of “everyone knows this is the outcome of undiagnosed and/or poorly treated hypothyroidism” and nobody cares enough to do anything about it. Yes subclinical is a different kettle of fish. Maybe you could find yourself on medication intermittently. I don’t know, because it seems nobody has tried to keep any kind of overlook on this. Normally you are just left to sweat it out as far as I can tell.
I am telling you this not to frighten you just to give you knowledge of where you can end up if you don’t control your medics. Don’t be shy on being persistent, should you need to. They don’t really care about you. They don’t really care about learning about the condition etc etc. As 80% of cases (appear) to be easily treated, unusual cases don’t break the surface.
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