Hi everyone, this is my first post on here. Hopefully someone can help. I am 27, had my thyroidectomy 3 months ago and have basically been a mess since!! I have not felt myself at all. Had my thyroidectomy due to a large multi nodular goiter with abnormal biopsies. I also had 1 parathyroid removed.
Since surgery, hair has fallen out/thinned, fluttering heart, sweating all the time, racing mind, ravenous hunger, weight gain and also major fatigue/exhaustion. I also have fibromyalgia and my pain has been unbelievable since thyroidectomy.
Anyway, my bloods have been tested twice in the past two months and both times my TSH is 0.04. Therefore it is suppressed. My GP has told me to continue taking 150mg of Levothyroxine??? Surely this is too much for me the fact that the TSH results are suppressed and I am having horrendous symptoms? Despite me telling him this he told me to continue on 150mg?
Has anyone experienced this and is it physically SAFE for me to continue on 150?
Coco x
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cocobella
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Could you persuade your doc to test Free T4 and Free T3? This is the only way to know whether your dose is too high. If you get results, post here with reference ranges and people will advise you. Otherwise, there is no way of knowing unless you have them done privately. It is disgraceful, if that is the case, given your TT, so I sincerely hope he will do the right thing, or refer you to an endo, since he clearly is not very informed about thyroid matters. Have you listed your symptoms for him? Could any of them be connected with your parathyroid removal? Do hope you get help soon. x
What was your TSH when tested before your total thyroidectomy? Indeed, any test results you have might help in answering your question.
Rod
Hi Cocabella and welcome to the forum - hopefully folks will chip in with their experiences, suggestions - It does help if you can get your actual tests and post them.
We are just fellow sufferers here not doctors, and don't actually advise. I've had a partial Thyroidectomy & presume yours was a total one, if so it will likely be a full replacement hormone, calculated by various means e.g. by weight.
Meanwhile please consider other things to help - like ensuring your vitamins and minerals are OK too -important and needed too (irons, ferritin, folate, B12 and Vit D for starters- Vit D really helped my joint pain btw I started trying to sort this one out first, hair loss can be low iron too) so much to learn! So here's the main TUK site which may help - best wishes, Jane
Hi Apart from all the extra tests, that we associate with thyroid disease, especially for you now. I would have a tSH, T4 and Free T3 done, even if it means on line. Use a Lab the docs will recognise. It is possible to have a very low tSH and be Hypo, only the T34 and free T3 will show it.Although Hypo and Hyper symptoms are sometimes the same. My TSH is in fact immeasurable.It is also possible and in fact likely that your body is still readjusting itself. 3 months is not long and we all know how annoying hormones can be.I would also have plenty of retests.I would certainly expect your Ferritin/iron and vit |D to be too low.
It is also true that Hyper is more dangerous than Hypo, especially to the heart., especially the Free T3.
Best wishes,
Jackie
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Love your last comment Jackie (definite sarcasm there!) when you consider Free T3 is so important yet it seems to be the one that is almost impossible to get anyone to test! Or that has been my experience
Hi Yes, it was always done automatically. Certainly to me my Endo and I consider vital. Funnily enough I do not have this problem with other NHS Labs. Mine is run by a little Hitler, who must think he is a doctor!
Sorry if you knew about replies. I find it so frustrating, when people do not realise
Definitely, why I put it like that, as hope not to offend people, but it seems so rude, if people think they have replied to you and you had ignored them!
Hi Jackie. Thanks for your reply. TSH is currently 0.04. 3 months ago it was also 0.04. T4 and T3 are within normal ranges according to my GP. Vit D is up at the normal level after a year of it being very low. I have vit d prescribed. Iron is the highest it has been also. I used to suffer with anemia about 5 years ago due to heavy periods. I am having a lot of fluttery heart symptoms, and severe sweating above the neck and on face. Very strange for me as I was always a 'cold/dry' person, who was always hypo lol. I have written a more in depth response below.
I had a TT in April 2013 and was on 125mcg thyroxine. It was increased in July to 150mcg to supress my TSH as a tiny amount of cancer was found in my thyroid. I became unwell Aug/Sept . Saw a Doctor beginning of Oct and he said all my blood tests were fine and I probably had a lingering virus. I didn't get any better, got more symptoms which reminded me of when I was first diagnosed with Graves. I made the decision to reduce my thyroxine so I went back to 125 and within days I noticed a difference and started to feel much better.
I did have an appt with my surgeon at the end of October so I was testing the waters to see if I was being overmedicated. My surgeon agreed I'd done the right thing in reducing my medication. The latest blood test showed my TSH was 1.2 - I think it was 0.06 when I was tested when I was ill. He's written to my GP telling them to keep me on 125mcg as its not worth suppressing my TSH when its making me ill.
Your symtoms are similar to when I was overactive. Where you on a lower dose of thyroxine before the TT? I've give it ago for a couple of weeks - if you feel better - you have your answer and ammunition for your Doctor!
Aww Bethy12, sounds like you have had a rough time. My symptoms are definitely overactive unfortunately which is new for me as I was hypo for a very long time. x
Hiya everyone. Thanks so much for your replies. Surprised that so many have you responded.
Sorry for not posting my test results, I am a newbie :). My recent TSH which was taken last Monday was 0.04. A month after thyroidectomy, (2 months ago) I had my blood tested and it was again TSH 0.04. Free T3 and T4 are normal (according to my GP) he never gave me numbers, but assured me they are within the normal range. I spoke with GP again yesterday and asked him, so should I continue to take 150mg despite being pretty much inactive at the moment with fibromyalgia, TSH showing suppressed and I have A LOT of the hyper symptoms. Which as I said above, is uncommon for me. Before thyroidectomy I was constantly Hypothyroid, my thyroid function had completely shut down at the beginning of the year. My TSH was usually at 8.0 most of the time. Then it did get brought down to the normal range about 3 months before surgery and I can honestly say the 3 months before surgery were actually the only time I have felt relatively well in the past 3 years.
My iron, parathyroid hormone and calcium levels are all normal. Parathyroid was always very high before surgery and has remained completely stable after surgery (phew).
As a 27 year old female, I certainly am not 'normal' lol. I am in excruciating pain on a daily basis, constant heart fluttering since thyroidectomy and generally feel a bit blue.
Not really sure what to do now. I live in a small city and there is a thyroid specialist about 40 miles away in a bigger city and I was thinking of maybe writing to him? He has had papers published and his main interest is thyroid problems. All of the consultants in my local hospital only have a specialist interest in Diabetes.
You definitely need a B12 and Foliates test, needs to be high in range. Do not rely on being told it is OK. For every test always demand from the receptionist your blood results and ranges, useless without, How patronising GP is! Tell him/her that it is your blood and you have a legal right to either refuse a certain test, or also to have the result on a print out with ranges.Been there, done that!
Endo`s all study Diabetes and thyroid etc., however, I would see one that does a lot of thyroid work, as if he thinks you need to see a Diabetic specialist, then he would sort that out.Having thyroid treatment is the one thing that rarely an emergency admittance to hospital, so safe to travel to see and Endo.It is vital to have the best person. Thyroid is very complicated. He will also do other tests you may need. If you have a any tests at hospital and not sent the results, phone the sec for a print out with ranges. likely to be different ones but so long as you have the ranges fine.
It does sound to me as if you are having too much T3, either converting well from the T4 , or more likely you need quite a lot less T4 and a tiny bit of T3.
Just today, my Endo was saying that it is a scandal some people cannot get T3, it has revolutionised treatment.
Hi Cocobella, It does sound as if you may be overmedicated. I had cancer so was overmedicated to con the pituitary to shut off TSH production and felt a smidge better when it was allowed to rise from not discernible to 0.03. Long term aim is to keep TSH <0.1 (well the endos aim is, mine is to feel better, balancing the risk of recurrence).
You might be reacting to some of the fillers in the Levo you're currently taking. If you're taking Mercury Pharma Levothyroxine ask your GP to prescribe Actavis or vice versa or simply ask your Pharmacist. Both are 'generics' so won't have budgetary implications for your surgery.
Ask for serum B12 and Folate tests before loading up with supplements.
You are so right. Finding a decent Endocrinologist is akin to cracking the Enigma code. They all appear to specialise in Diabetes first of all. I am looking for a good Endo in Herts/Bucks or even London. Very frustrating.
I totally disagree with you. I was started on 200mcg levothyroxine to totally suppress TSH. It was a massive shock to my system and each 25mcg decrease in dose improved the adverse side effects I experienced.
I am afraid I don't think that was ever the case. (Even allowing that I think you meant 400 micrograms.)
There is also the big question as to how much of the claimed potency was actually delivered. We have plenty of questions about that now - let alone decades ago when analysis was considerably more difficult.
Thyroid hormone processing is rather more subtle than you seem to think. I certainly believe that I feel very different if my dose is slightly higher than I need. (And that happens quite quickly.)
Hi I know and agree. Happened to see my Endo yesterday, not for thyroid this time. She was saying the same. She said that everyone should write to the Daily Mail, terrible paper but marvellous for campaigns.Just waiting for my GP to pick up on it, does not usually miss anything!
I'm off to see my gp tomorrow after lowering my thyroxine for the past 3 months. Iif I can get a reply before I go what tests do I need to ask for. Whatever was high before was affecting my piturity gland as I wasn't sleeping at all well, probably got about 4 hours sleep a night.
Hi Id do like the idea of sabotage! T3 only became available a few years ago and has revolutionised treatment I suspect it is the cost, added to the fact some GP`s and Endo`s are totally against it, usually the ones who will not prescribe natural replacement either.
Hi I am lucky my GP is still prescribing T3, on my good Endo`s instruction. She prescribed it when I saw her for the first time, with my armour.( I have to pay for that) I have had it since it first came out.It made a huge difference to me, I have been on armour for years, but my FT3 was too low until T3. I consider it a miracle drug, but only if needed, ie not suitable for everyone.
Unfortunately, yes, 1964 does certainly seem like yesterday!
You might be absolutely right about searching with, for example, Google. But if you try the same within PubMed you get 36 unrelated hits with D102 but over 180 probably relevant hits with DIO2.
No need whatsoever for an apology - I am simply trying to help ensure everyone has the best chance of getting the information they need.
Thanks everyone, a lot of well informed responses here. I find it worrying that my GP/Rheumy/Endo has never tested my B12 or Folate and then diagnosed me with Fibromyalgia as my symptoms matched and they said they had done all the necessary tests which were all ok. They also believe my Fibro was triggered by my thyroid problems. ???? I am going to demand a B12 and Folate test at my next appointment.
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