Will I die if I'm without medication for Hypo H... - Thyroid UK

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Will I die if I'm without medication for Hypo Hashimoto

sarajuarez2912 profile image

Just wondering since my TSH level was 5.76 willl I die if my Specialist doesn't prescribe me hormone replacement pills? Been hypo for months and she was still giving me Methamizole until she told me to stop, been without Methamizole for a month, which I don't need because it's only prescribe if you have Graves or are hyper. I'm wondering if she even cares for my welfare.

52 Replies

Are you feeling really poorly? You’re not at risk of dying with a TSH that’s a bit elevated, but you might feel like it! Undertreated Thyroid can make you feel very poorly indeed.

Hi there sara i too are very similar like you-i am on carbimazole at a 2.5 mg dose each day and also have hashi &graves and soon to be dropping my dose to every other day but back in december i hit the same tsh level as you 5.75 and then taking 5mgs-i was told if you become hypo whilst on carbi then you just have to lower the dose as you will not be given thyroxine!! Now you are off methanizole then the treatment would be different so im told but some gps in this country will not prescribe unless our tsh is 10 but in America where you are im not sure of the regulations-have you looked into this-tell your gp your symptons and how poorly you feel with no quality of life-i felt quite ill with hypo but not as bad as being hyper 😨 contact your gp as a matter of urgency-you could always get your own medication.xx

Wow thanks for letting me know about how you have to be a 10 to receive medication, I don't know about here, as I was thinking perhaps she's just checking to see if I go hyper, but wouldn't you think she would check to find out that perhaps I've gone into remission with graves? Maybe graves went to sleep? As I'm dealing with hypo now... or did the Methamizole slowed down the hormones ? As I've read also that usually that is what happens and your hypo for the rest of your life. Well I'm glad your able to understand as we have the same diagnosis. I really appreciate your time my friend.

No problem, its a very long journey isnt it?😊 yes in the uk gps tend not to prescribe for tsh's under 10 but there are people on here using levo with a lower tsh as they have managed to get a compassionate gp to listern or they self medicate. I was lucky as my levels are within clinical range but frees are low and they need to come up more-your gp should test your ft3 as this is the one that matters.xx

My last T4 FREE was 1.0

0.8-1.8 Ng/dL which was done last year in December 1,2017 she didn't do the other one.

Tile profile image
Tile in reply to sarajuarez2912

You may be hypo for the rest of your life but you have to beware of Grave's it can reappear. You heard of Wendy Williams the TV and radio host who experiences ocassional Grave's effects even though she was treated over 15yrs ago for Grave's? In the USA the upper range for TSH is now down to 3 decades ago it was 10. Your doctor probably wants to give your thyroid more downtime before Rxing meds and stirring up your thyroid.

Hypo doesn’t kill as such but leaving the body not functioning is dangerous and can lead to other serious and possibly life threatening problems - severe anemia , liver problems, heart , no platelets ( IMmune mediated thrombocytopenia ) etc

Thanks so much Beata. Lately without the medication of Methamizole I have been feeling better, even do I'm taking high blood pressure pills, which I never had but I believe it's because I'm hypo right now even tho I had been diagnosed as having Hashimoto. Been taking high blood pressure pill for a month now, was prescribe by my Medical Doctor. Noticed also I haven't been feeling anxious that much, I don't know if it's because I'm not on the Methamizole.

Tile profile image
Tile in reply to sarajuarez2912

Some and almost all blood pressure pills intefere with the conversion of T4 to T3. Just make your doctor is aware of this bc many doctors do not know this even when they Rx bp pills. My TSH.was over 60 before I was.dxd I didn't die rather worked and carried on with life until I felt too exhausted.

You won’t die (likely) but you’ll feel sick. I had hashis for years without knowing, I went years without meds. When I was finally tested my tsh was over 20 on multiple tests. I didn’t realize how bad my life was until I finally got medication and now I can finally do all the things I always saw my friends doing. Like going out and having the energy to do so (quite a big thing when in your 20s you can’t even drag yourself out the house to socialize).

If you are hypo with hashis you need t4, T3, or ndt, or a combination of those, especially with high tsh. Do you happen to know your other values? FT3, FT4, antibodies...

sarajuarez2912 profile image
sarajuarez2912 in reply to dang

The last T4 Free was 1.0 and that was in December 1, 2017 and she hasn't tested me again for it. She doesn't test me for FT3

dang profile image
dang in reply to sarajuarez2912

Do you also have the range for the FT4? 1.0 seems rather low, but without the range I don’t know for sure. If your FT4 is less than 50% of the range then you’re likely to not feel well. Although FT3 is more important. These 2 values will give you a good picture of how you are now and where you might be headed if you’re not given the right meds.

For example you can have high tsh and still have good levels of FT3 and FT4, so you’ll feel alright and think “I don’t need meds” but over time the thyroid won’t be able to overcompensate and those FT3 and ft4 levels will start dropping. That’s when you get hit with heavier symptoms.

There are ways to get FT3 tested privately, but if possible see if you can get your doc to do it, or find another doctor willing (if possible).

How are you feeling at the moment with a tsh of 5?

sarajuarez2912 profile image
sarajuarez2912 in reply to dang

I'm starting to feel more better, as I use to feel more anxious when my TSH level were high as one month ago I was at 7.76 that's when I ended up with high blood pressure but the Specialist told me to continue taking it as I was, I told her no cause she's been having me take it like that since last year of September, so she said then take it Monday and Friday once a day at 2.5 mg. But my TSH has been in the 5s now for almost a month now oh and the range for the T4 FREE 1.0 is 0.8-1.8 Ng/dL

dang profile image
dang in reply to sarajuarez2912

The ft4 is a little low halfway in the range would be 1.3

My experience is with hashis only so I’m afraid to really give too much advice since I don’t know well how methimazole works.

From my understanding many graves patients (with hashis) eventually become hypo after anti thyroid meds, and are then given levo. Is this what your doctor’s plan is? Or are they trying to regulate it forever with methimazole?

Rmichelle profile image
Rmichelle in reply to dang

Hi dang im in a similar situation to sara, i take carbimazole onlyv2.5 mgs every day just like sara used too but im also hashis and graves but was told when i was hypo back in december carbimazole would still be the treatment but at a lower dose, i think that saras gp had taken her off meth and waiting to see what happens-she wont be given meth again only if she becomes hyper, i would like to think she would be given levo just like me if i become hypo when not on carbi but i will have to eait and see😊

dang profile image
dang in reply to Rmichelle

Thanks for sharing your experience and clarifying that for me! I’m always happy to learn about different aspects of thyroid conditions which don’t necessarily pertain to me. I wish you all the best with your treatment 😊

Rmichelle profile image
Rmichelle in reply to dang

Thankyou Dang no problem-knowledge is power.😊

sarajuarez2912 profile image
sarajuarez2912 in reply to dang

She has not told me what she is planning to do as she had at the beginning wants me to go on remission and said once that maybe I would have to take Methamizole for the rest of my life.... but how is that if I have Hashimoto also. Yes I understand you but I'm grateful to learn as much I can from everyone here as you been very helpful. I was thinking if there is a possibility that maybe graves went into remission as I guess the Doctor would have to run an antibody to find out? As I don't know when they do this to get any information.

Like me i have hashis but how can she keep you on meths for a lifetime-when you are hypo you take thyroxine for life-mist endos believe if you are hyper then you have graves-mine said this to me and stamped me down as having graves but ive never had a tsi test!! I asked for one on several occassions but was refused each time-my gp done tpo fir hashimotos and that was confirmed, dont understand why your gp is hell bent on keeping you on the meths!!

I'm wondering if it's about keeping me sick so she can have the income coming in since she said there is no cure and I would have to be on medication for the rest of my life. I guess I'm just going to ask around and see perhaps I could find another Specialist to help me with my Thyroid. This Specialist has been a diabetic doctor for over 35 years and many go to her for Thyroid problems. I'm not diabetic just my Thyroid.

Yes ive just suggested the cashflow in my previous reply, personally i would investigate further as she does not know much at all, but your money elsewhere, we pay through our national insurance in the uk so we dont get charged here but it doesnt make it any better as our Endos are equally as useless and again they are diabetes specialists😕😕

It must be late where you are? Nightime am i right?😊😊

Yes it's going on 4 in the Morning. What time is it there?

Around 10am in morning.xx get dome sleep sara.😴😴😴

I woke up for kids to go to school. Is it Morning over there? It's 8:19 over here.

It is now 2.20 in afternoon, xx

Going to sleep for awhile, thanks and have a nice day.

dang profile image
dang in reply to sarajuarez2912

Who knows what’s going on in doctor’s heads. I personally had to go through about 6-7 doctors (3 of them being so called specialists, endos, thyroid surgeons...) they were all junk and kept me sick by following outdated guidelines and not caring about the clinical results at all, each and every one said no to trialing other meds (like t3 or ndt), some had never heard of them.

I finally found an amazing Endo who has basically turned my life around by trialling different treatments, and I finally landed on a mix of t3 and t4 that works for me. He also does every test imaginable, antibodies every time. And he goes above and beyond by doing tests that are unrelated to thyroid, but related to my other conditions. (I have a lot of stomach issues and my Gastroenterologist isn’t so good, so my endo steps in). But if I hadn’t shut the door in all the others doctors faces I would still be doing horribly today.

I can’t say if your doctor is good or not, but what I can say is you should have an open report with your doctor, they should spend time with you and tell you what treatments would be available in the future, and what might land you there. They should aim for clinical results, and have a greater understanding of your wellbeing than just your one condition and one medication. Sometimes you need to ask questions and show interest and sort’ve “push” a doctor to spend more time explaining things and considering other options. Some doctors respond well, while I’ve also had doctors roll their eyes at me and literally say “how long is this gonna take?”...

And yea a caring doctor is hard to find... I’m also lucky that I live in Germany where I can get these medications easily prescribed, I understand that the UK members here don’t have it so well 😓

So if you get to a point where maybe you’re not trusting your doctor, then at least get a second opinion somewhere else (no need to dump your doc, you’re allowed to have second opinions).

sarajuarez2912 profile image
sarajuarez2912 in reply to dang

Thanks for the information and I'm so glad to hear your doing good and how Awesome that you live in such a wonderful Country as my Aunt is half German but born in Texas in the United States. And yes my Specialist has rolled her eyes and once asked me what Free 4 since I asked her in the beginning of my visit if she would check it, she asked me she never heard of it. I guess she just was being sarcastic as she has run a test on that once or twice I believe. But I will take your advise as it is greatly appreciated. Again thanks so much xoxo

dang profile image
dang in reply to sarajuarez2912

If she rolled her eyes at a request for FT4 Test I would feel uneasy myself.

Yea I consider myself very lucky, I came here for work expecting to stay a year and then move back to Canada. But in that year I learned what healthcare meant here and got much better treatment than I was used to back home, and now I’m kinda stuck here I don’t want to go back 😂 it’s been almost 5 years now and for the healthcare alone I’m staying.

You’re welcome! All the best with everything 😊

Rmichelle profile image
Rmichelle in reply to dang

Lol-eye rolling and tutting is their trademarks😊 i ecpect plenty of that on tuesday when i have my 4th visit. Its always a joy!!x

Tile profile image
Tile in reply to dang

If you live in the USA it isn't difficult to have thyroid panels done. Most doctors are fairly current on these matters, and luckily mine are pretty cooperative when I give them a list of labs I want done.

Thats bad you havent been tested since december! Eeks you should have a full thyroid panel done at least every 6 weeks or how else do you know whats going on?

I'm laughing now because no she hasn't done a full panel to my knowledge. I thought this lady was the best since she is known in town as the best, and her reviews are awesome, as I also come across many of her patients and they are 100 percent satisfied... I guess I'm just one of the unlucky ones. All other Specialist in town that I've read have the worst reviews...

Well i dont rate her👎👎 has she paid people for their reviews.lol. i would change your gp-i bet she is taking your cash and laughing-she should be doing a full panel every 4-6 weeks, you may have to get ft3 done elsewhere as my local hospital refused to do it, i have to get mine done at endos hospital which is 50 mile journey😊

I have a friend who had her Thyroid removed due to cancer but her Doctor is a internal Doctor who treats her Thyroid and she says she the best as she has had her for 20 years but my insurance doesn't cover it, since she doesn't accept my insurance.

Thats a real shame she cannot accept you as one of her patients.😊

Rmichelle profile image
Rmichelle in reply to Rmichelle

Sorry forgot it is only around 2am for you!! Nite.

Beata_s profile image
Beata_s in reply to dang

It’s like a “hind sight “ disease - everything only makes sense once you are diagnosed and treated correctly

dang profile image
dang in reply to Beata_s


Thanks for the reply. I really appreciate your reply as I have bought me some iron pills and vitamins. I have vitamin B 12 also. Can I take all of them together and far apart from my high blood pressure pill?

shaws profile image

First of all request a new blood test. It has to be at the very earliest, fasting (you can drink water). Don't take medication for 24 hours and take after test. Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. You also need B12, Vit D, iron, ferritin and folate too. Always get print-outs of your results with the ranges as it makes it easier to respond.

Don't worry about your TSH as mine was 100 before being diagnosed and I am now well and healthy and symptom-free. It is through advice from Thyroiduk.org.uk before this forum began.

sarajuarez2912 profile image
sarajuarez2912 in reply to shaws

Thanks as for now a lot of the symptoms I had while taking Methamizole has gone, such as shortness of breath and bloating has gone down, as I'm not eating unhealthy as I use to, and drinking plenty of water. I'm only taking the high blood pressure pill and the vitamins and will start to take the vitamin B12.

shaws profile image
shawsAdministrator in reply to sarajuarez2912

If we supplement with B12 it has to be methylcobalamin sublingual. Usually we have gut problems if hypo and sublingual is best. There are two forms of B12 i.e. cyanocobalamin and methylcobalamin and the latter is best if we have a deficiency.

I will ask for them since I could not find those papers since I moved and will request them tomorrow. Yes my Medical Doctor prescribe high blood pressure pills since I had TSH level go up to 7.76 I noticed I had been getting headaches and after I ate one day some enchiladas that had a lot of cheese my heart rate went up, ended up at the Doctors for my medical check up and I have also been noticing that I would get anxious and anxiety so when the nurse took my high blood pressure she told the Doctor it was high. My Specialist had told me she didn't believe it was high blood pressure that's why she wouldn't prescribe any blood pressure pills when it had gone up twice in her office.

That's what I told my friend that if the Specialist could give me something for the hypo I'm sure I wouldn't have high blood pressure.

I'm in the United States

Thankyou for that info, i agree with you, i was hypo in dec with a tsh of 5.75 but still remained on carbi but dose went down to 2.5mgs with hashis and graves, there a probably not many decent knowledgeable endos or gps out there but im sure a few must be somewhere-sadlyim on my 3rd one and still looking for that good one.😊

Could you explain why it's low since I don't understand why and what I need for it to be at a level it should be. Of course I would never medicate myself without a Doctors prescription. Just love to know how my health should be in order to feel better.

She is usa i think.

I'm in the USA. But I love reading and I'm a member here.

The med you take for Grave's. does a number on your methylating enzymes and lowers B12 and folate. Have an active B12 and RBC Folate test done. If you have any genetic defects in your MTHFRenzymes 677C or 1298 which many people with and without thyroid issues have esp. Mexicans; then the Grave's med can really cause B12 and Folate deficiency and cause detoxification issues etc.

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