Should “ Borderline Hashimoto “ be treated. - Thyroid UK

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Should “ Borderline Hashimoto “ be treated.

Lorriken profile image
14 Replies

Hi,

I was feeling unwell, very moody, sleepy and cold. I did some research and saw Hashimoto was a possibly.I even asked my Endocrinologist, who immediately said no. You are depressed.

Very soon after that I was diagnosed with Hashimoto by my GP after a blood test. My GP immediately prescribed 15 micrograms Thyroxine. My endocrinologist, who I have been seeing for almost 20 years for weight control, rang my GP and told him to take me off it. So he did so. Over the past year she has said I am borderline Hashimoto and thyroxine would be bad for my heart. I have no known heart condition.

I am 66 years old. between 3 And 4 years ago I gained 25 kilos in less than a year. That was put down to stress - my father died. I have to admit I was binging on sugar though.

Forat least 10 years I have complained of being extremely cold when no one else felt cold. I was very fit, over the years I lost a lot of weight as a “ gym junkie” but was always freezing after, even in the middle of an Australian summer. I must stress that for long periods of my life I have been obese, as I am again now.

Lately I have been sleeping all morning and often afternoon. I am still depressed and moody, when I am awake. I have little energy and rarely go out.

I still have thyroxine in my refrigerator and am considering taking it.

L

My question is, is this dangerous? My instinct is no, but I would appreciate an informed opinion.

My test results.

August 2016

TSH 4.76 (0.40-4.10)

FT4. 9.5 (10.0 -22.0)

November 2016

TSH. 5.20

FT4 11.0

31st January 2017

TSH 3.41

FT4 9.9

FT3 4.1

September 2017

TSH 3.58

FT4. 11.9

FT3 3.7

Since the diagnosis I have been taking B12. Iron and D3.

In past years I have been deficient in D3 and been anaemic.

For a period of months, before and after the diagnosis, I was taking selenium. I have just started taking it again.

I am sorry this is so long. I ve done a lot of reading, but obviously not enough. I have also been searching your forum for answers for some time and this is why I was encouraged to ask my GP for a blood test print out.

I would appreciate any help you can give me in deciding whether I really do need medication. I have asked about T3 and received an emphatic “No”. My endocrinologist told me she wouldn’t consider giving me medication unless my TSH level reached 10,” or perhaps 6”.

Thank you in advance to anyone who can help.

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Lorriken
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14 Replies

You are clearly hypothyroid from your symptoms and also your TSH which is far too high, as well as your FT4 and FT3 values being low. Yes, you do need to start back on Levothyroxine, preferably 50 mcg daily. Waiting for your TSH to reach 10 is downright cruelty in my opinion, even by 6 you will be feeling dreadful and have even more symptoms. You also need to investigate your ferritin, vitamin D, vitamin B12 and folate levels as these nutrients are vital for thyroid hormone to work optimally.

Also, re taking T3, best to leave that off the table for now, and see how you get on with Levothyroxine (provided you can get it!). Some people do really well on Levo.

Edit: And whatever you do, don't take anti-depressants when the problem isn't really depression, but an underactive thyroid that is affecting your mood.

Lorriken profile image
Lorriken in reply to

Thank you Jadzhia. You have no idea what a relief I felt reading what you said. I feel like everyone but me thinks something is wrong.. all in my head, an empty excuse for my weight gain , etc. I was beginning to doubt myself. I will begin taking ( my almost full) packet of thyroxine tomorrow. Then it will be time to tell my endo what I have done. Thank you so much.

greygoose profile image
greygoose

A lot of questions spring to mind, reading your post - like what exactly is your endo doing about your obesite if she won't even consider the idea that you might be hypo. But what I would really like to know is : who did anyone manage to diagnose you with Hashi's, without doing the antibody tests? And, what is their definition of 'border-line'?

As to your test results, It seems your endo is incapable of reading them! Twice your FT4 has been under-range. And your TSH over-range. They go up and down, admittedly, but were they all done at the same time of day, and fasting? If not, I suggest you ask for another test, and do it early in the morning - before 9 am - and fast over-night. Have your breakfast after the blood draw. To give you a base line, then always have your blood drawn in the same way, in future.

It is your endo that is putting your heart at risk, by not giving you levo (T4) when your own, natural T4 is below range. Taking levo does not endanger your heart.

Your GP is also a bit of a muppet for prescribing 15 mcg! I didn't even know that they did such small doses. It should have been at least 25 mcg - preferably 50, as you have no heart problems. Prescribing doses that are too small is more likely to make you feel worse, than better.

No, It won't be dangerous for you to start taking levo again, but you need a decent dose, not just 15 mcg. And, how exactly are you going to square it with your endo? Have you thought about that? Because what you have in the fridge isn't going to last forever, what are you going to do when it runs out? And, in six weeks, you are going to need to retest and increase your dose. Best to have a plan before you even start.

Better still, change your endo. This one obviously knows nothing about thyroid, and is not treating you in the best possible way. In fact, I'd go as far as to say that she's being negligent! But, I really don't think that, at this point, you are in a position to self-treat.

Lorriken profile image
Lorriken in reply togreygoose

Thank you Greygoose for your reply and suggestions. Actually I forgot to mention that important point. I was diagnosed by my GP as a result of an antibody test. He then put me on that low dose. I don’t remember if I fasted for the blood tests, I think I did because it was morning. My endo has asked for another blood test in Feb next year and told me not to fast. I will follow your advice and fast. I feel very disappointed with my endo, she has supported me for almost 20/ years and has missed this and downplays it as nothing very important. You are right, I will have to think this through carefully. After the advice I have received here I now am more confident about being more assertive. I might start with my GP, after all,it was he that diagnosed it but unfortunately admits he doesn’t know a lot about it and has left it to the endo up intil now. I will ask him to refer me to one of the female gps in the medical centre and avoid the endo.

Thank you again Greygoose. It’s not all in my head!!! :) I’m not lazy when I sleep all day!!! And maybe some of the 20 , 25? Kilos will come off.

Lorriken profile image
Lorriken in reply togreygoose

Greygoose. I just checked. The GP gave me 50 micrograms, not 15.

greygoose profile image
greygoose in reply toLorriken

Ah, ok! That's much better. :) And how many have you got left?

Lorriken profile image
Lorriken in reply togreygoose

A lot. 192

greygoose profile image
greygoose in reply toLorriken

Well, that changes things... Assuming you start at 50 mcg a day for 6 weeks, get tested and increase by 25 mcg, and continue like that until you get to 200 mcg a day - should you need that much - you have enough for just over six months. So, that's not bad at all! And you might not even need 200 mcg a day.

So, that does give you time to decide what you're going to do next : come clean to your doctor, or continue to self-treat and source your own labs and supplies. Or a mixture of the two. And, also to learn as much as you can about thyroid so that you end up knowing more about the subject than your doctor.

Go for it, I would say!

Lorriken profile image
Lorriken in reply togreygoose

Thank you again. I do feel a sense of relief. I will do as you suggest with the medication and I will also tell my Gp that I will ask the female dr ( who I have seen and like) at the practice to supervise. Btw my dr of 30 years has sold his own practice and works part time where I see him now. This makes this plan easier and I know him well enough to be honest. I do know though, that he wouldn’t prescribe after endo telling him to stop.

greygoose profile image
greygoose in reply toLorriken

Well, I hope it all works out for you. :)

phoenix23002 profile image
phoenix23002

Many hashis sufferers find that adopting a gluten free diet helps to lower the antibody numbers and lessen the frequency of attacks on their thyroid. Also 200- 400 mcgs of selenium is an important component of this protocol. Good that you are taking selenium once again.

greygoose profile image
greygoose in reply tophoenix23002

400 mcg of selenium is rather a lot. It's usually advised to take 200. I should think it would be best to get tested for selenium before taking as much as 400. You don't want to take too much. :)

Lorriken profile image
Lorriken

I will be careful. It’s the selenium. A friend’s pyschatrist recommended ( for me) 2 drops a day.

Thank you Jadzhia, Greygoose and Phoenix 23002. I have a plan now and I feel I have some support. :)

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