2 years on and getting worse

[Mountainsofmymind]

Hi all,

I wondered if anyone could help.

I was diagnosed with Graves disease in June 2018. I immediately started 40 mg of Carbimozole and propranolol for the symptoms, 20mg.

After a few months I stopped taking the Propranolol as the hot flushes and racing heart and leg jitters symptoms stopped. I had a loading dose of vitD as my levels were low, which I had to push for, and subsequently tests show vitD levels are ok.

However, despite my levels now being in normal range and almost bordering on being Hypo, I am still on treatment (currently taking 20mg - 40mg one day and 20mg the next) I feel absolutely awful.

*Massive weight gain, which continues to increase despite diets, exercise etc.

*Intermittent blurred vision

*Extremely achy joints

*Painful ribcage (the whole way round) every morning and with exercise- almost debilitating pain.

*Anxiety

*Swollen ankles all the time. Sometimes legs swell and most recently swollen hands and fingers with exercise.

*Hip pain

*Right shoulder blade pain

*Severe bloating

*Bruise easily

*Endometriosis- a large mass was discovered in my womb in February 2019, initially thought to be Ovarian cancer, but MRI found 2 (on each ovary) massive Endometrial cysts. I was also told after a diagnostic laparoscopy in July 2019 I had a frozen pelvis and Adnomyosis. So, in December 2019, I had major surgery to free all my organs from the frozen pelvis, my womb was fused to bowels, complete hysterectomy, removal of cysts and Endometriosis.

I am now on HRT patches, but my achy joints, bone pain, rib pain etc still continues.

The pain in the hip and ribcage started before I had the Hysterectomy and my GP has done a bone density scan and a hip xray which all came back normal.

I am convinced that my Graves disease elevated my estrogen levels causing the Endometriosis. I am also certain now, after almost 6 months on HRT that the achy joints and pains are due to my Graves disease.

I've previously queried Cushions and had a mid afternoon blood test which came back as normal. However I wonder if there is more going on. I am concerned that this could be Lupus, or Adrenal fatigue as both fit my symptoms.

Does anyone know if when Graves is diagnosed that there are particular markers for this autoimmune disease or do doctors just presume it's this one as it's the most common?

I have a telephone follow up this friday and I just feel I need some answers. My consultant wants to remove my thyroid or do radioactive therapy, but gives me little explanation as to why he doesn't think medication will work. I had to push to be weaned off as I was on 40mg from the beginning and stayed at this level despite my levels coming down.

Are there certain questions I should be asking? Or certain tests I should have?

I have only ever had a ultra sound on my thyroid gland which showed a slight increase in size, which is not noticeable.

Should I ask for an MRI on my thyroid?

Any help with this would be amazing. I've had the worse 2 years of my life with my health, since diagnosis in 2018.

I'm 39 years old. I feel about 90.

[pennyannie]

Hello MomMind

Well, I was diagnosed with Graves Disease in 2003 and had RAI thyroid ablation in 2005, a treatment I deeply regret, but at the time I knew no different.

Do you have a confirmed diagnosis of the Graves Disease antibodies, commonly referred to as TSI or TRab : thyroid stimulating/ thyroid blocking antibodies - if not that the first blood test that needs to be actioned.

The Carbimazole is an anti thyroid drug that stops you own thyroid production, so it's important to get the balance here, as though you don't want those " hyper " symptoms back, you also don't want to be on too much AT drug and experience equally debilitating ' hypo ' symptoms. When your metabolism runs too fast or too slow, it will compound digestion and you do need to also keep ferritin, folate, B12 and vitamin D maintained at optimal levels to utilise thyroid hormone replacement and keep your core strength and stable.

Some people are offered block and replace treatment, whereby as the AT drug blocks their thyroid hormone production T4 - levothyroxine is added in thereby giving the patient back a measured level of thyroid hormone so not to fall too far into hypothyroidism.

I wasn't offered any options, so I think it all depends on the knowledge, skill set and hospital preferred options of treatment.

Do you have any current blood test results to share ?

Ideally these should show TSH, T3 and T4 along with any vitamins and minerals results ?

If you don't know of the Elaine Moore Graves Disease Foundation website and you might like to take a look, as along with this amazing website, I've managed to turn myself around and am now much improved from where the NHS left me. Elaine Moore is a medical researcher and has Graves Disease and after RAI back in the 1990's found no help nor understanding with her ongoing health issues, so she wrote a book, to help others who might be in a similar situation, and now has this website and offers help, with an open forum, to any patients, world wide.

[Mountainsofmymind in reply to pennyannie]

Thank you penny annie for your reply. I don't have my latest results, I will get these tomorrow when I have my telephone appointment. I will also ask about the antibodies to confirm.

I do not want the surgery or radiotherapy and feel very much that there must be other ways to get this under control. Thank you for the link to the website I will check it out.

I have found it so very difficult to get a grasp of this disease and understand it all, coupled with my Endometriosis diagnosis, I feel I have somewhat neglected my Graves and body to concentrate on getting through the surgery etc. So I really need to focus now on finding the right balance for me.

Any help so far would be amazing. I've had no choice about medication with this and am always trying to ask more questions when I see my consultant to get a better understanding of my outlook, but feel rushed and just treated like a number.

I will write these things down and ensure I ask the right questions.

Thank you so much. X

[Mountainsofmymind in reply to Mountainsofmymind]

So I have just spoken to my consultant over the phone. He couldn't remember what treatment plan I was on so found myself reminding him why he had my on my current dosage (this happens every time I see him and he often just repeats the same actions as forgotten the last) I got as far as explaining just one of my symptoms which he dismissed immediately as being connected to Graves (lung/rib pain).

I had to really push for my most recent blood results.

TSH- 5.84

T3- 3.8

T4- 13

Currently taking 20mg Carbinazole one day and 20mg the next.

He has advised I drop to 20mg per day now and stated I probably wont ever go into remission and will need definitive treatment eventually but wont plan that yet given the current climate (removal of thyroid). He refused to explain this further with me, when I asked why I'd need surgery, given my levels have been heading in the right direction for almost a year. I asked about the Graves disease diagnosis and all he would tell me was that my antibodies were positive and high suggesting Graves (8.4) No specific testing, just a suggestion its Graves. I asked about the TSI or TRab and he ignored it and shut me down telling me he couldn't speak to me any longer because he had other patients to call.

This call at this point had lasted about 3-4 minutes, much less than a normal appointment.

I said I still had more questions and he refused to answer them.

He told me to email his secretary and then when I asked what her email address was he refused to give it to me stating it was long, and I'd probably get it wrong!!!

He told me to wait for my follow up letter for the email address, which normally takes weeks to arrive.

To say I'm upset is an understatement. I'm angry, confused, and feeling completely let down.

I am in such poor health and feel totally alone in this.

I am now considering where I take this as I dont trust a Doctor who treats his patients this way. I understand things are difficult in terms of day to day services with our NHS, but I have a right to ask questions about my health, my body. And 5 minutes is not enough.

I have to wait another 2 months at least to speak to him again.

I am very tempted to wean myself off this awful drug myself and fund my own way.

[pennyannie in reply to Mountainsofmymind]

Hey there,

I'm so sorry you were unable to get any answers and your time cut short with the consultant.

So depending on these blood tests, your levels of T3 and T4 look very low, though we have no ranges, and your TSH is looking too high and a dose reduction of the anti thyroid blocking drug, Carbimazole a necessary action.

Reducing your dose to 20 mg. every day will be a step in the right direction.

Was it agreed that you should stay on this lower dose and get another blood test in a few weeks time to assess the results again, with a view to a further dose reduction if thought necessary, and obviously if you are not suffering any untoward symptoms.

As you quite rightly say, without a confirmed diagnosis of Graves and a positive TSI/TRab blood test, there should be no discussions of removal or ablation of your thyroid.

I would have thought if there was a positive TSI /TRab for Graves a copy would be on your medical records with your own primary care doctor.

Is your own doctor able to offer any help with your questions and is there a conversation to be had of being referred to a different consultant/endocrinologist ?

The NHS seem to give about a 15/ 18 months window where people are treated with the AT drugs. Some people during this time attempt to find remission, some people try Block and Replace as previous explained, and others, myself included, seem to be earmarked for RAI, or surgery from the very first appointment.

There is a school of thought however, that staying on long term low doses of an anti thyroid drug is another option for some people. It's probably more expensive long term, than the other options, and probably not encouraged, but it does seem to work well for some people.

There is an eminent endocrinologist Professor Toft who wrote an article in 2017 in his final years working in the NHS.

It is on this website somewhere, but I'm sorry, I don't understand this ' cut and paste ' thing : entitled " Thyroid Hormone Replacement - A Counterblast To Guidelines " he states on page 3, a third of the way down :

' I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine 1-31 or surgery in patients with Graves disease, irrespective of age or number of recurrences of hyperthyroidism : '

I understand things are very difficult in the current climate, but would suggest in the first instance to try talking with your own primary care doctor and sound him/her out, on what s/he can do to help you manage the current situation.

P.S. It is very common when with either hyper or hypo health issues that your body doesn't metabolise food properly, as your body clock is either running too fast or too slow as previous mentioned. If your doctor is to run a follow up blood test for your TSH, T3 and T4 in a couple of weeks, can you ask him to also to run ferritin, folate, B12 and vitamin D. ? These are the results we need to see with the ranges, to be able to help you better, and suggest if you can get these done, start a new post, as people very rarely look at " old posts " as this is on a rolling screen, and if you don't actually notify somebody that you replied to them, very rarely do they look back as the pressure is always there with a newer post to reply to.

[Mountainsofmymind in reply to pennyannie]

Pennyannie - thank you for your response. My consultant literally just called me back. I think perhaps he realised he was being unhelpful and a bit rude before!! He gave me the time to ask the questions I wanted. I explored the Auto immune diagnosis with him again, and this appears really unclear from my point if view. He explained the differening ways in which Graves is diagnosed. Firstly if showing the eye disease or if not then going on the antibody levels. So in short, I was diagnosed by using my antibody levels which were 8.4, which he states is high. But he did say it shows 'an auto immune disease' (as opposed to Graves specifically) and it's only my initial TSH levels that were indicative of Graves. Pretty sure they were something like 0.01 or 0.001 at diagnosis. My initial T3 at diagnosis was 19.8.

I think a call to my gp would be helpful and I think a look at all my levels over the past 2 years would be interesting.

I believe my elevated estrogen levels from my Endometriosis were affecting my Thyroid levels and the only time my TSH- levels moved was when I was placed in a chemical menopause (shutting off the estrogen) prior to my hysterectomy in December. And since the hysterectomy they have continued to move into 'over active territory)

My TSH levels in December 2019 were 4.8, so it proves they are continueing to rise despite my meds being reduced.

Given this, do you think I am right to have some hope I may go in to remission?

I will be refusing removal of my thyroid until I am confident everything has been explored fully and a better understanding of my health is gained.

I queried Adrenal Fatigue and he has now agreed to check my early morning cortisol levels.

He is also now going to re test my liver, diabetes and vitD levels in a couple of weeks. (I've had previously had low levels and taken loading doses)

I also queried whether I am just suffering from side effects of the Carbimozole as my symptoms fit that too and should try another drug which he has said is possible. Going to check the bloods in 2 weeks and go from there.

I am going to see what the next few weeks bring in terms of my levels in line with reduction of my meds, then ho from there. I am now considering whether I should pay for private care as I really do feel I have been ' earmarked' from the off for definitive treatment, and I don't think I need my thyroid killed/removed.

I will post updates in a few weeks with my results, but thank you so very much for responding and giving me these links.

It doesn't feel so lonely when a stranger can relate more than a single soul I know.

Thank you x

[pennyannie in reply to Mountainsofmymind]

OK,

Well I'm sorry but the way you diagnose a disease is with a blood test.

And the antibodies will tell which autoimmune thyroid disease you have.

There is Graves Disease and there is also Hashimoto's Disease.

And we see a lot of people on here being told they have Graves when in fact the blood test antibodies are positive for Hashimoto'.

There is a post on here, just today, with this very same situation, of someone diagnosed and put on Carbimazole but the antibody tests is a positive for Hashimoto's and if you have Hashimoto's you should not be on an anti thyroid drug.

Hashimoto's is when your thyroid is attacked and goes a bit haywire, causing symptoms of hyper and hypo, as when the attack is over, your own thyroid will be a bit worse off, and if you extrapolate that out, over a period of years of attacks, and then partial recovery the thyroid looses it's ability to support you at all.

Sorry, I've gone off on one :

Any way, I didn't have a problem with my eyes, until the RAI treatment caused my TED. I've had to read of my situation back to front, and RAI can exacerbate or cause TED - ( thyroid eye disease ).

I can't comment on your chances of remission, we first need to know whether you have Graves or Hashimoto's as it sounds as though your TSH has been relied upon rather than a full blood test, which makes me very angry as it is just not acceptable :

As the Carbimazole is reduced your TSH should come down and your T3 and T4 go up, but you also need to know the ranges of both as different laboratories use different measures. Generally T3 ranges are around 3.1-6.8 and T4 ranges 12-22. and most people feel well when both T3 and T4 are about 75% through the relevant ranges, which might mean your TSH " looks " too low or suppressed.