Thyroid UK
90,646 members105,018 posts

Help!

Hi I am new to this so bare with me. I'm at a last resort. So I had a Thyroidectomy 3 years ago. Why, I had a fluctuating thyroid and a large goytre which turned out to be my complete thyroid, which was growing with years. Before the procedure I was on no medication. The consultant said I should not need more than 95mg of levothyroxine based on height (6ft) and weight of 60kg. Every six weeks I am constantly being reviewed with the generic TFT. Every time the results come back my meds are increased. 6 weeks ago I got my results and go said my meds need to be increased again to 175. I explained that this causes my heart to go really fast average 120bpm when resting. So he prescribed propanol? Saying it will help. Was then advised this should not be a permanent solution. So I followed GPS advice and took the new dose. Last six weeks have been hard with my resting heart rate increasing to 130bpm and when actually active it is plummeting to below 50bpm. I went for my bloods today and nurse was really concerned as she said I'm extremely warm and clammy and do not look well. She took my bloods and said they will prob be back by this evening. I'm quite concerned as I have other health conditions too and am worried that they are missing something. I do not have a endocrinologist (since the op) as was told that because I have no thyroid I do not need one. Is the constant strain on my body going to make me Ill? I have enlarged lungs,hypermobility possible EDS arthritis and raynauds. I'm a single parent so am just super worried. Don't think I can take feeling this way anymore. I also work full time and am finding it hard to find the energy to work clean and be the best mum I can be. Any advice please. As the doctors really don't listen to me.

41 Replies
oldestnewest

It sounds like you are overtreated. Do you know what your normal resting heart rate is? It would be really helpful if you could post your full thyroid blood test results along with their reference intervals (numbers in brackets). If you don't have these ask you doctor's surgery for them. It's possible they are not paying attention to your signs and symptoms and just going by the blood test (quite likely, they are always doing this). Occasionally the TSH assay can be wrong due to interference by thyroid antibodies, hence full blood test results with TSH, fT3 and fT4 would be most helpful. (Often the lab refuses to do fT3 even if the GP has asked for it).

Giving high doses of thyroid hormone and compensating with propanalol is a bad idea, except when the patient has profound hypothyroid signs and symptoms. What symptoms do you have at the moment?

Reply

Thank you for your reply. When I have the results I will get them to write them down. I know they usually over 20 sometimes completely off the scale to where there's no number. Not sure if that makes sense.

Symptoms at the moment is clammyness, constantly tired but not sleeping well due to night sweats. Shaking. Dizziness. Hair loss. Weight all over the place meaning up n down though never exceed 65kg. Mood swings . Finding it hard to get motivated. Wierd sensation at times as if things are not real. I know that probably sounds ridiculous. Before thyroidectomy my resting heart rate use to be around 72bpm.

I'm not eating regularly as either too tired or not hungry.

Thanks again

Reply

Sounds like thyrotoxicosis, too much hormone. If you don't get your blood results soon I'd reduce your dose by 50 mcg. If you plan a private blood test do this first. I'd try and get your results first because if antibodies are interfering with the assay you will be wasting your money on a private test.

Reply

Would it show up on nhs tft?

Reply

Can't pay for it til pay day anyway. Which is end of this month. Will post results tomorrow evening. Thank you again. At least I don't feel I'm going crazy

1 like
Reply

The NHS blood tests will give useful information, especially if they include fT4 (and perhaps fT3) along with TSH. I would skip your next dose of levothyroxine and we can review it after we see your results.

What were your symptoms when you were first diagnosed? Were you hypo or hyper thyroid? (Another possibility is that your goitre was caused by the pituitary putting out too much TSH.). If you had your antibody levels checked at any time it would also be useful to know the results.

Please note that I'm a patient not a doctor.

Reply

I was classed as underactive. Though very skinny which apparently didn't match. Basically before op I had a fluctuating thyroid. So was some times hypo and others hyper. I was not medicated from age of 16 to 30. But apparently goytre was growing by each year and making my voice changed. Told by docs I really should get it removed. Turned out is very rare that the entire thyroid is in the throght. But mine was. After op had a reaction where body locked (low cakcium) pos that parathyroid had been effected. Then they released me back to my GP. Only tests have been the standard TFT.

Will post the results I'm given tomorrow :( I had no symptoms apart from the bloods fromTFT which were only done as was when a child (no proof) was diagnosed with thyroid problem so had to have tests every six weeks. Only had dizziness and skinny guess they classed them as symptoms. Results were only ever slightly under or slightly over or normal. When I left home I stopped the meds ( these were thought to be my mum's which got crossed to me. Mum passed when I was a small child. It's so messed up. Now sat three years with no thyroid n medicated to where I feel so ill

1 like
Reply

Please read my last post to see my results as I'm confused though feel less crazy

Reply

Please read my last post to see my results as I'm confused though feel less crazy

Reply

It's possible that you can't convert the T4 from your levothyroxine to T3 which is the active hormone. In a healthy person, the thyroid produces some T3 directly, and produces some T3 from peripheral tissues like the liver, for example. When the thyroid is removed the body has to rely on peripheral conversion only, and if people can't do that well, for any reason, then their T3 becomes very low and they feel dreadful. If you mix in a low Free T3 with too much Free T4 then it's a guaranteed recipe for feeling awful.

You can order tests for thyroid function (and many other things) without the involvement of a doctor. Depending on the test(s) required they may require a blood sample from a vein in the arm of a finger-prick test may be fine.

thyroiduk.org.uk/tuk/testin...

These two test bundles are the most popular but there are others which are cheaper, but contain fewer tests :

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

Reply

Thank you for your reply. I thought that a while ago but docs kept just ignoring me.

Is that in the UK As Well? As I was told by the doctor that only they can authorise tests. I did find that wierd but thought they know what they are talking about :(. Now feel stupid. Can't continue this way. Worry I'm on the path to heart attack which am 33 so hope that doesn't happen.

Reply

Yes, the links I gave are for UK testing. If you want the NHS to do testing then only doctors (and possibly some nurses?) can order them.

But there is nothing to stop people ordering their own tests from private companies who have set up businesses to do testing for people for a fee. Some companies will only deal with doctors, but there are quite a few which deal directly with the public.

Reply

How do i know who is best. Willing to try anything as can't keep going on like this. I don't have a support network so I am literally all my kids have

Reply

Sorry, I seem to have been missing the fact that some of my posts have had replies. Notifications don't seem to be working well.

Thyroid UK - the charity which runs this community on HU - has a page about private testing that is worth reading and following up :

thyroiduk.org.uk/tuk/testin...

You can order tests for thyroid function (and many other things) without the involvement of a doctor. Depending on the test(s) required they may require a blood sample from a vein in the arm or a finger-prick test may be fine.

These two test bundles are the most popular on this forum but there are others which are cheaper, but contain fewer tests :

medichecks.com/thyroid-func...

bluehorizonmedicals.co.uk/t...

For info on how each company operates :

medichecks.com/how-it-works

bluehorizonmedicals.co.uk/a...

Reply

Thank you. I will check them out

Reply

Hi Shell8426

Where are you based? Is it UK or elsewhere. You should have an endocrinologist BECAUSE you have no thyroid. I think before you do anything else you want to change doctors if at all possible as your one (if they told you that an seeing an endo wasn't required) is failing in their duty of care for you. You sound seriously over medicated at the moment and I agree with humanbean that you should if you can afford it get your bloods tested elsewhere or demand that your doctor has them all tested again but includes reverse T3/T4 as well as vitamins D, B and folate.

Seriously though you really need to change doctors as soon as possible!!!

Reply

You don't always have an endocrinologist after having your thyroid removed if your blood levels are stable after the operation they discharge you back to your GP.

Reply

My levels have never been stable.i was discharged from endo immediatley after my op

Reply

That's not right then I had my thyroid removed in February this year and was only discharged from my endo in July as others have said you are clearly not getting the right treatment and if you can see a different doctor.

Reply

Thank you for your reply. I've always said that but apparently I was wrong in their eyes

Reply

I don't get why they don't say all this. So confused and worried. Everything is so hard to do yet trying to hold down a job, take care of my kids, housework. I will order the tests just don't know where is best. Thank you for all your replies :(

I'm based in the UK-bedfordshire. I have tried several doctors over the years but all seem as useless as the next

Reply

Blue Horizon and Medichecks both do finger prick blood tests you can do at home and get results within a week. On Thursdays medichecks have special offers for thyroid folks. You can get a good test for about £69. It saves the stress of having to deal with a useless doctor! Post results on here for further advice.

Reply

Thank u I will do the test like you say. As scared. Sounds stupid but feels meds r doing way more harm. Went from fit n healthy to struggling to even make a coffee. I use to be an athlete and gymnast. Seems a different life. Now I'm on steroid inhalers paranol and Levi. :(

Reply

results are as follows: so previously 29/06/2017 - TSH 21.33 T4 was 21.9. This is on the dose of 150mg. Now my results are TASH 6.37 and T4 21.3

Reply

Thank you guys. I will check it out and pay for it.will post results fro. The test today, tomorrow. Then get my own one done. I k ow I have a genetic issue and maybe the full test will shed some light. Can't keep doing this. Gone fro. Healthy to feeling like time running out. All coz of a goytre is so ridiculous. If I could go back n not have it removed I really would. Always say if suggested make sure it's a good reason. Should of known as on day of ok they thought they were only doing a partial. Apparently totally dif procedure. Seconds before they did it they realised it was complete removal. In tears right now as so scared. 3 years of constant strain on my heart and body

Reply

Sorry for mistakes have huge finger tips

Reply

Hi Shell8426 this link is for your PALS (Patient Advice Liaison Service). I really think you should also make a complaint about your doctor and demand to see an endocrinologist as soon as possible 1394192784_xvPw_complaints_leaflet

Hopefully the link will work, if it doesn't you need to copy this into your internet browser

Complaints Policy - Bedfordshire Commissioning Group

Hopefully the .pdf will open for you. Hope this helps.

LiTai

Reply

What will it do? Where do I begin. When I left hospital after op they didn't give me my meds. Said they couldn't? Got told then to contact pals. But with how I've been am no good with all this stuff... don't like hassle. Just want to be how I was. Can't believe the difference. So sad thinking about it all hence y I've just tried to do my best. But now at the point where I just dunno what to do. Sorry I sound pathetic n stupid :(. Am actually a teacher n force myself to be completely different. Make a difference. Then I get home n it all hits me :( thank you for supporting me. Feel less crazy. All I get from docs is it takes time. But seriously where do I need to end up for them to listen? In a morgue where my kids have no-one? Sorry so sorry. But scared fed up n confused

1 like
Reply

Thank you everyone. Reading back... why did I not see something was wrong? Too much faith put in nhs I know they save lives but why have I been so gullable. Am so stupid tomorrow when I get my results will hopefully help

Reply

If you are in a doctors surgery with more than 1 doctor ask to see the main named partner and advise you need to see endo immediately as you feel that the care that you are receiving is not acceptable. Explain that you are having palpitations, dizzy, sweating etc. I know it is difficult but you need to take care of yourself in order to be able to look after your children. If you have any family or a good friend show them this forum and tell them what's going on with you, they aren't stupid I'm pretty sure at least 1 person has worked out that you aren't your normal self.

I have lived without a thyroid for 24 years after having cancer in my early 20's and I found that unless I took care of myself no one else will, so I will shout, argue and generally make myself a pain in the butt if I think that my care is not correct because the only person who truly knows how I feel is me and if my thyroxine is lowered or increased and it's making me unwell I will make sure that my doctor or endo knows and does something about it.

2 likes
Reply

So I'm back from the doctors. Was yet another doctor but gave me the impression he knows a bit about endo. Yes I'm systematic - too much thyroxine. My results are as follows: so previously 29/06/2017 - TSH 21.33 T4 was 21.9. This is on the dose of 150mg. Now my results are TASH 6.37 and T4 21.3

When I told the doctor what happened at my last appointment and where the doctor hadn't listened to me when I said 175 will make me ill. This doctor said it's not just about getting the bloods right it's about the patient too. He has dropped me back to 150mg. If results are not great in 6 weeks he will refer me back to the endo. Not sure what my results mean in comparison. He checked my heart rate which was 124bpm blood pressure was good. Any more enlightment?

Reply

A TSH of 21.33 with fT4 21.9 is inconsistent and consequently the doctor should not rely upon the TSH. I can think of two possible causes: -

1. You are selenium deficient. Since selenium is required to convert T4 to T3 the pituitary is unable to fully respond to T4 as it needs to convert it to T3, so you end up with a high fT4 and high TSH. In these cases patients are hypothyroid, you are most likely hyperthyroid so we can discount selenium deficiency.

2. Your antibodies are interfering with the TSH assay. These assays are immunoassays, they work by detecting an immune response to TSH. Rarely, a patients antibodies can confuse the immunoassay in which case the doctor needs to request a different assay. I'm getting out of my depth now but there is a person on this forum, #diogenes, who has a lot of expertise in this area so hopefully he will be able to advise you.

Your second doctor is much better, I'd try and stick with him. I'd skip a couple of days levothyroxine and then resume at 150 mcg, you will adjust to your new dose a lot quicker. Rather than wait six weeks I'd contact your doctor and ask if they could look into the possibility of assay interference, say perhaps they could contact the biochemist or endocrinologist. I can't see the merit of running another assay in six weeks time if it is unreliable. In any event if your pulse does not come down in a week or two I think it would be better to reduce your levothyroxine a bit further, until your pulse is normal and you feel OK. If you become hypo you can always go back to a slightly higher dose - better to protect the heart (and brain) in the short term.

I have some sympathy for GPs in these situations, they are taught to rely on the TSH and are not specialists in thyroidology. However, it would be a good idea for you to take charge of your care (with their help). Your GP should do a physical examination to assess your status. Dry skin and a slow weak pulse suggest hypothyroidism. A strong rapid pulse and a fine hand tremor indicate hyperthyroidism. If the doctor checks your pulse manually, the old fashioned way rather than with a sphygmomanometer, then they can actually feel the rate, strength and regularity of your pulse.

Just to repeat, I think they should check out the validity of the TSH assay before doing another blood test in six weeks. In the meantime they should medicate you according to your response rather than a blood test that seems to be giving incorrect results.

Reply

Thank you for your reply and for the amount of detail. I understood most of it :).

I will keep you posted.

How do I ask the person you mentioned? In your reply?

I was about to take today's dose but makes sense not to.

Reply

I will contact them for you (there's a way of quoting their username in a post so that they get a notification but I've forgotten how to do it, so I've sent a message). If you skip a couple of days levothyroxine you should see your pulse come down within the next few days. You may need another dose reduction at a later stage.

Reply

I got this comment from Diogenes: -

First thing to do is to get TSH done by two different independent methods, to ensure that there is consistency in the results. Then according to the lowest value, you can diagnose better and be surer that changes in thyroid hormone dose will indeed affect the TSH value. It is rarely the case that interference in TSH tests gives a too low result - always too high. And of course quite insensitive to real TSH changes.

This is advice from a top expert in the field. I would pass it onto your doctor and ask them to contact the hospital biochemist with a view to doing another TFT using a different assay. It is quite likely that your treatment is being titrated according to an inaccurate assay and so puting you at risk of thyrotoxicosis.

Reply

Thank you so much what are different arrays? Sorry if that sounds dumb.

Reply

Different assays. An assay is the blood test, what happens in the lab, how they measure TSH in the test tube.

Reply

Ok thank you. Am I allowed to request the doctor to do that? As they say there's no point testing until a further 6 weeks

Reply

Of course you can ask, they can only refuse. I can't see the point of testing in six weeks time if the assay is giving wrong results. It's logical to confirm the assay is OK before doing more tests with it or relying on it for treatment.

Reply

Ok thank you I will contact them and ask. With my TSH dropping to 6. Something on the high dose of 175 but t4 stayed pretty much the same. Would that indicate something was working even though it was making me so Ill?

Reply

If your antibodies are interfering with the assay the TSH will jump up and down as the antibody levels vary. Other substances can cause assay interference also (I don't know any more of this point). When we take high doses of levothyroxine it seems to 'backstack' and then suddenly kick in. Our response is variable, this is based on patient experience and is not research based. I think misleading TSH results are causing your doctor to over-medicate you but the only way of finding out is to get someone with expertise in this area (biochemist or endocrinologist) to try a different (better) assay.

Reply

You may also like...