At my wits end

[Surfer1986]

Hi. I’m a 33year old female. I was diagnosed as having Graves just over 2 years ago, I was put onto Carbimazole and Propanolol but my thyroid levels were going up and up, at their worst the FT4 was 62 and the FT3 was 28, so eventually was put on the highest dose of Carbimazole 60mg daily, and 80mg of Propanolol in the view to having surgery to fully remove the thyroid. To try and cut a long story short I was admitted for surgery & sent home because the thyroid levels were too high so I was given Lugols iodine to take 3 times a day and told to come back in 10 days which I did do but unfortunately due to a HUGE lack in communication the surgery didn’t go ahead as no one knew who I was or why I was there so was sent home again and to this day I still haven’t been sorted out.

Now during this time with my thyroid levels so high, my blood pressure was completely and utterly normal. My main symptoms were vomiting, wanting to sleep all the time, hungry all of the time, mood swings, tremors etc.

We are over 2 years down the line and for the past 8 months or more it’s been hell. My blood pressure has gone sky high I’m regularly getting numbers of 160/110 and higher so the surgeon then refused to operate because of that until I was seen by a blood pressure specialist, he said as soon as I’ve been seen he’ll get me in as a priority...I saw them in May and they put me on Ramipril 5mg daily blamed my thyroid and wrote to the surgeon to say I’m safe to have surgery. Despite the continued efforts of my GP we have had no luck in hearing back from the surgeon.

I now cannot sleep but I’m exhausted, I’m depressed, I’m vomiting regularly, I don’t go out unless it’s to work, I don’t have an appetite, I’m breathless just going upstairs and I generally feel really unwell.

I guess as a bit of a protest rightly or wrongly it doesn’t matter, I stopped taking my Carbimazole and Propanolol back in October and the GP contacted the thyroid specialist who said to take blood regularly to check my levels....well despite me coming off my meds I’ve been told my thyroid levels are now NORMAL.

I’m totally confused and so stressed out. How is that possible? If it is then why am I feeling so unbelievably awful?

Please help 😭

[Wetsuiter]

clever folk on here will need your blood results (with ranges) for

T3

T4

TSH

any antibodies you had tested.

with that info, I'm sure you ll get some good info.

[Surfer1986 in reply to Wetsuiter]

Thankyou I’ve added that now 👍🏼

[Surfer1986]

Sorry I forgot to put, my latest blood test results were this Tuesday.

TSH- 1.59

FT4- 15.8

FT3- 5.6

That’s all they told me I hope this is of some help.

[Wetsuiter in reply to Surfer1986]

Give em a ring and get a print out (or get online access), so that we can see the ranges the lab used

[humanbean]

I'm speculating i.e. guessing and I have no medical training.

I am hypothyroid, not hyperthyroid.

I've had that feeling of bubbles in the chest with chest pain myself and I remember how horrible it was. It was nearly 20 years ago though. Unfortunately I can't remember exactly what it turned out to be. It was either caused by an acid reflux problem or desperately low iron.

For acid reflux I've always taken either PPIs or ranitidine. I prefer ranitidine to the PPIs. Some people (but not me, sadly) can improve their stomach and gut health by substituting for low stomach acid with an artificial acidic substitute such as betaine hydrochloride + pepsin, or with apple cider vinegar + water, but I have never been able to do that. I just wish I could.

For iron-related issues I've always made sure that I get my iron levels tested properly before acting on the results (if action is needed). This is a finger-prick test you can get done privately without involving a doctor :

medichecks.com/iron-tests/i...

Look out for special offers : healthunlocked.com/thyroidu...

And if there are no special offers available for a test you are interested in you can still get 10% off :

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

Low nutrients is common in both hypothyroidism and hyperthyroidism, and iron deficiency is the commonest nutrient deficiency in the world. Be aware that there is a lot more to nutrition than just having a result in the reference range. Optimal is better, but optimal varies depending on which nutrient is being discussed. Perhaps you have other low nutrients that could be making you feel ill? Common deficiencies in thyroid related conditions are iron, ferritin (iron stores), vitamin B12, folate and vitamin D.

[SlowDragon Administrator]

Absolutely essential to test vitamin D, folate, ferritin and B12

You also need TPO and TG thyroid antibodies tested fir Hashimoto's

TSI or TRab antibodies tested for Graves' disease

Please get ranges on your TSH, FT4 and FT3 results

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

For thyroid including antibodies and vitamins

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

[Tigger235]

Crikey, sorry to hear of all the issues you've had. Having an over active thyroid can be realky tiring... Your body is revved up and working super fast (metabolism etc) and I found the drugs also made me feel terrible

I have seen two endocrologists, and both said the same.... You are put on carbimazole for 12 to 18 months (maybe in addition to other drugs like levithyroxine) and then they just stop the treatment and wait to see what happens.

I don't know why or how, but for some people the thyroid resets itself once the medication has been stopped. For others, they continue to have thyroid issues so have to look at other options like surgery.

Not sure if this helps but wish you well and hope you get better soon.

[Heloise]

Hi Surfer, this is a real puzzle and I can only offer some thoughts. I always thought stiff or clogged arteries caused high BP but actually your adrenal glands and your vagus nerve are more involved. Your very high thyroid may have put your adrenal glands in reverse because when one is high the other is low so this makes me wonder if possibly your adrenal glands need treating. I don't know about the reason for vomiting.

Your thyroid gland isn't really the root cause and I urge you not to remove it unless nothing else works but now your TSH is apparently perfect.

I'm not in the medical field but often refer people to John Bergman's videos on you tube and he has many on the thyroid and adrenal glands.

[tgirlnc]

how are you now? Just saw this post..and as someone who has had graves since 2011...I have been through it.

[Espisnowwoman]

Just read your post. I have had graves since 1997 with a few months in remission. Hope you feel better. You have to educate yourself here in the usa we have few good doctors who understand graves disease.