Graves Disease to hypothyroidism?

[lucertola28]

Hi

In September 2012 I was diagnosed with an hyperthroidism and after tests with the endocrinologist he confirmed was Graves Disease.

I was on carbimazole for about 12 -15 months and my thyroid levels were at a normal level for a few months so was taken off the meds and then monitored every few months. Was discharged from the endo and gp then checked bloods every 6 months, then each year. Until now they have apparently been normal.

Just had annual bloods done at end of last week and GP phond me yesterday to tell me my levels are all over the place. I had been feeling quite tired but put it down to being kind of busy and new term (I work in a primary school in TA type role).

TSH is 71.94 (range 0.27-4.2) and Free T4 is 6.1 (range 12-22) and I have been put on 50mg eltroxin to start and have to get bloods done again in 6 weeks.

Has anyone experienced this, where Graves has been under control and then in remission for a few years and then had problems with thyroid going underactive (rather than a relapse and hyperthroidism again)

I am aware of hypothroidism being a risk if you have have radioiodine treatment or surgery but I didn't do these.

Thanks so much for reading, any help would be great

Pretty much every woman on my mums side of family has this history.

My maternal grandmother & I both had surgery as remission wasn't likely and on high doses of carbimazole and my cousin eventually had radioactive iodine treatment after 20+ years on a very low dose of carbimazole.

My mum, sister & aunt however went hyper then hypo naturally and have been on smaller doses of thyroxine for years.

Are they referring you back to the endo? My GP often gives conflicting advice to the endocrinologist I see which isn't helpful.

Yes I had / have Graves, first diagnosed and treated in 2000 as a 15 year old. Resolved with a ton of medication.

This year it was confirmed that I have hypothyroidism, which was the cause of two miscarriages, weight gain and brain fog.

My GP was useless. I paid to see a private endo, who recommended a course of action and treatment. They wrote to my doctor with this plan who then saw the light and prescribed me the right dose of thyroxine.

I'm now 15 weeks pregnant and my TSH is under control. And I no longer feel dopey and forgetful. Hopefully I'll lose the excess weight after birth. So it seems to be working!

Are you still under endo moose?

I had my bloods checked a few weeks ago at 6 weeks pregnant - GP told me everything was fine and to wait three months to get checked again despite 25 year history of graves, two miscarriages and a rising TSH over 10. Luckily I'm still under endo from my last pregnancy who advised increasing my thyroxine from 100 to 150mcg but it's worrying to think they'd have left me like that.

Hi @Thataintnoetchasketch I was supposed to be referred to the endocrine specialist via my hospital but all the hospital has me down for is a blood check at 20 weeks (too late in my opinion). I'll be demanding a test from my GP tomorrow and will check that the TSH is under 2.5 myself. If it's not I'll demand an endo appt with the hospital!

I feel so let down by my GP in this regards. They should have picked up my TSH levels after the first MC (they were tested) but they didn't pick up the anomaly.

Thank you for all the replies.

I haven't been referred back to the endo yet but I say my GP will if levels don't stabilise as last time she had me referred before she even did a blood test as she was pretty certain from symptoms. She's very thorough and helpful luckily.

That's awful your gps were so useless or let you down, really frustrating!

How long did you find it took the eltroxin to have an effect?

Hi, there's an excellent book by the BMA (family health guides) on thyroid disorders by Dr A Toft. I didn't have graves myself but it describes it as having 3 possible paths - ongoing repeated hyperthyroidism, stabilisation or degrading into hypothyroidism. So it sound like this is your path.

It's very much worth getting this book (about 5 quid from Amazon). The British thyroid foundation are extremely helpful too; I'm a member and find the quarterly magazine really helpful.

I also rang them recently to rant about care during pregnancy which is still often shocking and they were really helpful. (There are new guidelines coming out soon apparently).

My DH had Graves in 1986 successfully treated with iodine. He was warned it might go hypo (like the rest of us!) but all these years on it hasn't. He has other auto-immune problems big time but his thyroid is fine

Quite a frequent occurance. The antibodies that over stimulate the thyroid eventually destroy it.

I had an overactive Thyroid diagnosed 3 years ago, treated with Carbazimole for a few weeks, then I found a natural remedy which I used to keep my Thyroid from going overactive (much to the fury of my Endocrinologist who refused to see me again )
Then after a year, overnight, my Thyroid went the other way.. to under active.
I had all the symptoms and ballooned in weight, but of course GP blood test said I was fine (even the GP said she was unfortunately 'constrained' by the NICE guidelines, but could see I was under active).
I resigned myself to a decline in my health and continued to feel awful and gain weight.
Then learnt about 'Iodine Loading' treatment via the internet and read 'The Iodine Crisis' book, followed the Iodine Loading treatment in the book (note: this is NOT radioactive Iodine!! Just Iodine!) and after days was feeling better. 18 months later I am totally fine, have had no problems with my Thyroid, either over or under active & back to normal weight.
Iodine deficiency causes an 'unstable Thyroid'.

I still take Iodine every day, 100mg, about 700x the RDA of Iodine that the NHS recommends.

There is hardly any Iodine in a western diet, what tiny tiny amounts are added to table salt usually evaporate. Iodine used to be added to bread, until about the 1940s when it was stopped, someone decided it was dangerous

Book for the 'Iodine Loading Protocol' :
read.amazon.co.uk/kp/embed?asin=B00C5JLD9Q&preview=newtab&linkCode=kpe&ref_=cm_sw_r_kb_dp_r1tZzb34Y5N3B

I thought we were supposed to avoid iodine for some reason

My endocrinologist has shifted tactics from trying to make my thyroid to just outright destroying it and then dealing with the hypothyroidism which he insists is easier radioiodine failed, it's still raging away despite carbimazole so some time next year either more aggressive RAI or surgery. Thyroids can be so annoying, T4 is quite low but TRab and FT3 too high. Also no TSH. Maybe I should join that thyroid association, their book was helpful.

Endo did say at the very beginning sometimes Graves burns itself out >>> hypo, sometimes it goes back to normal but they have no way of telling which way it will go for any individual

Radioactive Iodine IS dangerous (Iodine itself is not dangerous at all, a complete myth caused by some faulty study from years ago), I can't believe Endocrinologists tell people it will only be absorbed by the Thyroid, tissue all over our body absorbs Iodine, especially the breast tissue, brain and sex organs!

Read the 'The Iodine Crisis' book. A real eye opener!!

I do get the impression that doctors believe an under active Thyroid is easier to work with than over active...but what happens when your Thyroid cannot convert the Thyroxine prescribed? This does happen...because the Thyroid is just unwell altogether..it's gagging for some Iodine!
Do they know that the ovaries also produce Thyroid hormone? Hence decline in production of Thyroid hormones as the ovaries decline...no they never seem to know this .

curtaintwitcher if I was you I'd insist on an urgent referral to an endocrinologist asap. I was seen by them every 6 weeks throughout my last pregnancy and bloods taken every 4 weeks. I was red pathway because of the Graves and in my last pregnancy what's left of my thyroid tipped towards hyper again which is unusual. They also took specific blood tests in late pregnancy to check risk of baby having thyroid issues in the first weeks. I can't remember exactly what they were (I've been at work all day and my brain is fried!) but we had to take LO back to hospital when he was two days old for a blood test. I'm also seeing obstetric consultant because I'm pregnant with Graves but she only sees me at beginning - leaves it with the endo and will see me again near due date to take me off red pathway if all growth scans are fine. You need to be under the obs consultant to get the extra growth scans. I'd def go back to your GP as soon as you can

lucertola i upped my Levothyroxine two weeks ago and I'm starting to feel much better this week. I usually notice a difference in a fortnight. When I have to drop my dose it usually takes about 4 weeks to adjust to it.

Thank you all so much for sharing your experiences and for the advice and book recommendations.

I am realising once you have any sort of thyroid problems it can be ongoing and effect you for life even though some have times where symptoms under control. I remember my endo telling me for example if I was ever planning to have a baby in future very important that my thyroid is monitored even if I feel fine as I'll always have the autoimmune disease.

My mum has hypothyroidism and has been on eltroxin for years so I definitely think thyroid problems run in the family.

I am very grateful that I have a very good gp (and excellent endo should I get referred back) who is very caring and good at explaining treatment and following up with things. I am in Ireland so it seems a little easier here to choose your GP and have one you feel is right for you and get appointments quickly.

@Thataintnoetchasketch thank you so much for your message. I just don't know what to do with my stupid hospital and GP.

I have had a standard TSH test via the GP tomorrow and booked a trAB test for tomorrow (at my own expense).

I will then take the results of both to a private endo for advice. I have fought so hard with the NHS over this but they just don't see it as an issue. Even though I had two MC prior to being prescrived levothyroxine (which was only done after the private endo wrote them a recommendation)!

curtaintwitcher that's awful. Yeah it's the trAB score which indicates risk of baby having thyroid issues at birth that would need monitored.

I'm still seeing endo from my last pregnancy and LO is almost 2 but GP made sure the referral went in again and referred me himself to the obs consultant. What about your midwife? In my area it's usually the midwife who flags up any issues and will refer to the consultant for red pathway management and they order the extra growth scans etc.

@Thataintnoetchasketch so I've paid about £160 for a private trAB test and I'll take the results to a private endocrinologist for another large sum. At least she can provide advice if the results are not good.

I don't actually get an assigned midwife as I'm at a large hospital. Just a team of midwives- I probably won't see the same one twice. My next appt is next Friday.

My midwife at the booking appt was aware of my graves and subsequent hypothyroidism but all I got from that was a TSH and t4 blood test for 20 weeks.