Advice please: Hello I’m new to the forum and... - Thyroid UK

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Advice please

Frances0008
Frances0008

Hello

I’m new to the forum and looking for some advice. It was discovered I had hypothyroidism after giving birth two years ago. I had been extremely tired during pregnancy and as a new Mum and eventually after many doc appointments for a huge range of random complaints they did a blood test and I had close to 100 tsh.

Since then I went on levothyroxine which initially didn’t seem to make a difference, tho they said I was fine and in normal range.

I asked for my dose to be increased, and I went up to 175 levo, felt increadible but they said it was now too high and reduced it to 150.

That also felt great, so I was happy.

They said it was still too high and reduced to 150/125 every other day. I felt ok on this dose, tho not quite so full of energy.

Then they said it was still too high, so they reduced to 125. Since then I’ve been so exhausted, out of breath from doing simple tasks like washing up, having to lie down all the time, unable to pick up my kid, struggling to engage or speak with people, tearful, carpel tunnel, my joints and muscles ache, been getting dreadful debilitating hives, big ezema flare ups, now I can’t lift my arm above 90 degrees and it all aches and itches so much I can’t sleep.

Just had my last test result and the doctor says it’s still too high. The f4 is normal range at 15 and has been coming down but tsh is still too low tho it has been increasing. It is now 0.11, and was 0.09 at the test before

When I told her I feel really symptomatic she said I had depression and none of these things are related. I felt so miserable as I feel like my symptoms are making my life unmanageable - the insanely itchy and swollen hives especially and not being able to pick up my daughter. And I know that on higher doses I felt so much better, but she says I’m just looking for a simple fix and it’s not the answer but she couldn’t give me one other than it’s in my head. I asked about allergy tests and she said no, couldn’t be done unless you know what you are allergic to. It feels like I’m having an enormous allergic reaction all over my skin, my skalp, my nose, especially whenever my skin is compressed around my bra or my socks. It’s so unbarable I can’t get anything done.

I feel quite hopeless now as she hasn’t given me any options for going forward. She seemed kind of annoyed. She wants me to just keep going like this and come back in three months time for another tsh and t4 test.

I wondered if anyone on here could offer any advice or guidance as I’m at a bit of a loss

Many thanks,

Ellen

13 Replies
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Oh, and I’ve also put on close to two stone since my dose reduced below 150 six months ago.

Thanks for advice.

SeasideSusie
SeasideSusieAdministrator

Frances0008

Hi Ellen

First thing to do is get a print out of your results. We also need the reference range to be able to interpret the results as ranges vary from lab to lab.

If you can get hold of as many as possible going back, post them on the forum with the amount of Levo you were taking at the time the test was done, and say what the dose was reduced to, we can see what the GP was doing.

Was it only TSH and FT4 that were tested? To complete the thyroid picture FT3 is also needed but rarely done.

Also, if you have had thyroid antibodies tested, and any vitamins and minerals, eg Vit D, B12, Folate, Ferritin, then post whatever you have got.

You are yet another person who is being dosed according to their TSH level. It can take people months or even years for their TSH to respond to a decrease in Levothyroxine once they have been overmedicated. I don't know whether mine will ever recover. Fortunately for me I have moved to an area with desperately stretched healthcare resources so nobody is interested in giving me a thyroid blood test.

It is easy for someone with autoimmune thyroid disease to become over medicated (and most of us do have autoimmune issues). It's not fair that doctors are such slaves to the TSH that we are made to suffer needlessly.

What brand of Levothyroxine are you currently taking? Some brands make people react due to the fillers. (itchy skin reaction). Have you tried taking allergy relief tablets like piriteze? (you can get generic ones from supermarkets which are cheaper than piriteze). If they help then that's a pretty sure sign that you are dealing with an allergy, and often changing the brand of Levothyroxine can help. There's a brand called Teva which a lot of people can't take, although I'm not sure whether that's an allergy problem or something else. You can talk to the pharmacist about changing brands. Your doctor seems very unsympathetic - is there anyone else you could see?

shaws
shawsAdministrator

Welcome to our forum and it is not unusual to become hypothyroid after childbirth.

Unfortunately you have a doctor who only looks at the TSH (thyroid stimulating hormone) which is from the pituitary gland and rises when our thyroid gland isn't function properly, the result of your TSH being 100 when, finally diagnosed.

The fact that you felt well on your optimum dose of levothyroxine then the doctor decided to 'adjust' dose to "fit" your TSH into a range, when in fact the aim is a TSH of 1 or lower when diagnosed as hypo. Pity doctors are unaware of this.

Ask you doctor to increase your dose by 25mcg every six weeks until you are back to a dose which relieves all your symptoms and is the reason you've put on weight because your metabolism is too low/slow.

You want a Full Thyroid Function Test - NHS usually only do T4 and TSH which aren't informative enough. We have private labs whic will do them or those that GP wont.

All blood tests have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. This helps keep your TSH at its highest.

This is an excerpt re weight gain:-

"Because obesity and hypothyroidism are very common, there are many patients who have both conditions," says Ronald J. Koenig, M.D., Ph.D, Program Committee Co-Chair, and Professor, Department of Internal Medicine, University of Michigan Medical Center, Ann Arbor. "These patients (and sometimes their physicians) often assume the hypothyroidism is causing the obesity even though this may not be the case. This study is important because it shows, unfortunately, that only about half of hypothyroid patients lose weight after the successful treatment of their hypothyroidism. It will be interesting and important to have follow up data to know whether the patients that lose weight are the ones most in need of weight loss, and to know how significantly their weight loss contributed toward achieving a normal body weight."

sciencedaily.com/releases/2...

restartmed.com/levothyroxin...

Another link plus excerpt:

If you have persistent symptoms, you can demand that your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have hypothyroid symptoms, and no hyperthyroid symptoms, demand that your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose.

They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. It's simple common sense. TSH is not a thyroid hormone and is not an appropriateguide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 level.

hormonerestoration.com/

Thank you everyone for taking the time to reply.

I feel a bit better now I have a bit of a plan. And reassured that I’m entitled to be listened to by my doctor. I was so low after my appointment this morning, because I thought my test would show that I needed my dose increasing and instead I was just told I was imagining it all and that if anything it should be decreased further. I really appreciate the reassurance and advice.

I’ve looked at my levo and it’s a bunch of different brands but includes some teva. I will probably ask to avoid it in future.

It’s a relief to know there may be some justification to my feeling so ill when my tsh is less than 0.4 which is what she wants to get it above. It is very slowly increasing, but at the expense of my health. And that’s not ok.

I’ve made another appointment to speak to a different doctor and I’m going to ask for a print out of all my test results so far so I can see the t4 part and how that’s changed. That being said, I had no idea about not taking your pills until after bloods.

I’ll say that to them too and ask if they will retest me and also do a full thyroid test at the same time as that’s never been done and no one has a clue what my t3 looks like or if I’m even confirmed as having an auto immune disease.

I think I was over prescribed last year, because I track my periods and temperature levels for contraception, and I can see when my periods changed markedly at Christmas back to what they normally are, so 9 months ago now. I think at that point I was probably on the right dose - high enough to feel well but low enough not to be effecting my period cycle. But Since then they’ve kept cutting it until I feel terrible like this.

I hate having to battle with doctors, but it’s just awful being told it’s all in your head when you’re suffering debilitating pain and exhaustion - not exactly a great state to be in when you need to advocate for yourself either!

And such a go to line for doctors - the number of times they’ve said that to me in the past when I’ve actually had an undiagnosed thyroid issue - and yet again I’m being told the same!

And then after looking at my results, assuming they will retest me, then I’ll ask to go back up again by 25 as I was right as rain on that dose, even if she thinks it’s too high. I’m the one who has to live with it!

If they refuse I guess I’ll change doctors?!? Or ask to see a specialist? Or just keep making appointments with them until they get fed up of me and just give in??

All these terms and understanding what the results mean is still very new to me even tho it’s been two years since I’ve been on levo. It isn’t until now that I’ve had any sort of relapse back into the state I was in when they first saw it in my bloods. I’m having to learn a lot fast to try to understand the situation I’m in now and what I can do to get out of it.

Thanks again. There’s a lot of information out there, but it’s so hard to get your head around. Great to have real people that understand and can give you practical advice for dealing with learning to manage it.

Ellen

So sorry to hear you have been treated like this and especially when you have younge child and should be enjoying this special time. Is there another doctor you may be able to see st the surgery or even another surgery that covers your address? This doctor doesn't look as though they will ever get it right for you. My may have to ask if you can see an endocrinologist at the hospital though you will need a referral and your doctor may not want to do that and risk being proved wrong! Just read a post this morning where the lady went into a Walk In Centre and was treated properly. It again doing that you may not be so fortunate. I dont know what happens if you tell your doctor you want a second opinion. Thyroid Uk who run this forum have recommendations for helpful endocrinologists that you could access. Details on their site or you could start a thread on hear asking for suggestions near to X or if you don't want to say where exactly you are say willing to travel to .... and list a few places including your own that you could travel to but there's still the problem re a referral.

I spoke to a different doctor at the surgery today who agreed to print out my thyroid results for me to collect, and to do a blood test for r3 and certain vitamins. He said they don’t do r3 because it’s not relevant for hypothyroid, but would do for me this one time. He said antibodies were irrelevant and I couldn’t be tested for that as they did that at the beginning to confirm it was autoimmune (never told me!!). He said he didn’t agree with the things I said I’d read at the thyroid charity but it was good for me to learn about my illness (patronising!!). So he thinks the same as the other doctor,... but is happy for me to read my records!

I just got the dr toll article through from thyroid uk, so once I’ve looked at my records and I can see my results for the last time I felt well, I’ll go back to them and say I want that level and take the article with me.

Hopefully it will work. Not sure what I’ll do if not!! I guess just keep going back until they get so fed up of me that they give in?!?

Thanks again all!!!

I don't know of a test called r3. Are you sure that it wasn't T3?

Doctors often say that T3 isn't relevant to thyroid treatment or thyroid disease but this is 100% nonsense. T3 is the active thyroid hormone and it is the levels of this that make us feel well or ill. Too little and people feel hypothyroid, too much and they feel hyperthyroid. Too little and too much T3 are determined by the patient not a reference range.

TSH itself, that doctors use for dosing patients with, isn't even a thyroid hormone, it is produced by the pituitary. It doesn't make people feel anything. TSH is supposed to control the functioning of the thyroid but it doesn't do a good job of it in many people with thyroid disease.

but is happy for me to read my records!

He can't stop you reading your records, you have a legal right to do so. You can ask for access on line and/or ask for copies as well.

I just got the dr toll article through from thyroid uk, so once I’ve looked at my records and I can see my results for the last time I felt well, I’ll go back to them and say I want that level and take the article with me.

I think you mean Dr Toft. Unfortunately you might not find blood test results for thyroid function for the last time you felt well. Doctors only do thyroid function testing if they feel there is a reason to. And strangely enough they hardly ever feel there is a reason to. And a TSH test from 5 years ago (for example) probably won't help much. Now that your thyroid has failed the relationship between your TSH and thyroid hormone levels is not guaranteed to be the same as it used to be. Although doctors claim the relationship never changes of course.

One thing you might not be aware of is that it is possible to buy levothyroxine over the internet without a prescription. But don't jump into doing that just yet. There are lots of scammers around who just want your money. Don't assume that people who send you private messages on the subject are honest either.

You should find this thread helpful :

healthunlocked.com/thyroidu...

Ah yes. I meant t3 and I meant dr toft! Sorry, all new to me.

I’ve been having blood tests every three months for nearly 2 years now cos they keep changing my dose so I recon my records should be quite enlightening hopefully!

It seems fairly clear to me that my dose is too low now, whatever the tests say! It’s just a case of trying to get my doc to agree. If not, then I guess I will have to go all black market! As a single mum I can’t afford to be this unwell! My baba needs me!

Also thanks, for the really helpful thread for learning how to look at results. I’ll be referring back to that I’m sure.

I’m also going to get a private blood test done to look at the other bits the GP won’t test.

Hopefully I’ll get a clear picture and know where to focus my efforts.

This place is so incredibly helpful and enlightening! I can’t believe what a sorry state of affairs the treatment of thyroid is, leaving so many people so horrendously Ill - and offering no explanation or answers.

SlowDragon
SlowDragonAdministrator

BEFORE seeing any thyroid specialist it's recommended to get full private testing

If you have Hashimoto's then low vitamin levels are EXTREMELY common and strictly gluten free diet often helps many

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you have results and ranges

I will do. I’m in the process of getting my tests done, and will post here as soon as I get the results. Thanks.

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