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Hyperthyroidism/graves- concerns about high BP and Pulse

Rosie20152017 profile image
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Hello everybody.

I’m new here . I’m 62 yrs of age and have suffered for many years with Chronic Fatigue and other symptoms. I don’t know where to start as its a long Story and I feel overwhelmed with my health issues. I’ve wanted to Post on the Forum for months now but couldn’t get round to it due to my Poor Health-with only limited energy and I’ve always found it near impossible to write because of Brain fog-I get stuck. My mind gets completely blocked with writers block. Its all so negative and a wasted Life- I would prefer to pick up the phone and talk- would be easier. Anyway I must try and be brave and force my Mind into gear to tell my Story.

In January 2017 I went to my GP as my left ankle has been swollen for some time on and off- sometimes quite swollen. Also it feels like there is a nerve trapped in my foot. Its an horrible feeling of numbness at times and it comes from the side of my foot- round near the little toe and under the sole of foot-under the heel. He sent me for a Blood Test. Now both ankles get swollen. When I told the GP that the feeling is of an elastic band being caught-up, he said ‘yes, thats what it is’ but he didn’t seem interested to do anything about it. Anyway, this is going back to last year now. I received a call from the surgery- Blood Test Result showed TSH was suppressed- 0.01 FT4 30.6. GP wanted me to come back for a repeat TSH some months later, but I never went back at the time. The reason being is that for years I have been unwell with Chronic Fatigue and all the tests for Thyroid Function that I had done over the years had always come back as ‘so called’ ‘normal’, also to be honest with you I try to keep away from doctors as I don’t want to end up feeling even worse than what I feel now- this is what I’m afraid of. I did go to see one of the Thyroid docs in 2009, from the TUK list of docs - I’ll come to this later- but just to say for now that the treatment didn’t work- I’m not blaming this doctor, but I never got better- maybe never will- I don’t know yet.

Another reason I didn’t go back for repeat Blood test at the time ( I have been back to GP since - I’ll come to that later) is that I can’t take on too much at once, also in February 2015 my best and only friend passed away after a long illness We were together for 30yrs. I’m now isolated and go for days without speaking to anyone- I have a family member who takes interest and checks up on me to see if I’m alright, but its not the same as having that special friend- as he knew me for so long and understood my illness. How can I be suffering with Hyperthyroidism when I can hardly get out of bed and have to drag myself around to get anything done-its always been this way and has been for Decades- and I fear that its got worse- maybe because I’m older now? Aren’t you supposed to be full of energy with rushing around getting things done when your Hyper? I’m none of these.

I know my Blood Test says so- that I’m Hyperthyroid, but the way I see it is that I have Hyper Results but with Hypo symptoms. All what I’ve written above I wrote months ago, and could not get round to finishing this Post- so frustrating, So I’m starting to write again now. Since then things have changed, and as you’ll see later in this Post I was admitted to Hospital with very high pulse because of graves and am on medication, so yes, now I have the symptoms of hyperthyroidism.

Going back to the thyroid doctor I saw from the TUK list in 2009, I had the usual Blood Tests- Thyroid Function Tests , Adrenal Stress Index- the Saliva Test. Doc said my thyroid is not that bad but my Adrenals are low. I was put on a low dose of Cortisone and Nature Thyroid. I did mention to him that the Natural Desicated Thyroid Support will not work as I have experienced taking the Nutri Glandulars in 1994 when I saw a Martin Budd who was/is a Naturopath . and the glandulars. didn’t work for me. I had heard of him through his Book- Functional Hypoglycaemia and I did the 6hour Glucose Tolerance Test the Results were so low,even after I took the Glucose drink- the results were more or less a flat line. The fasting Blood glucose level was low and after the drink was low as well. He said he was surprised that I never had a fit with low levels like that. This doesn’t matter now as its History but Its important to me that I tell you the story-from the beginning- as boring as it is for me to write all this, as it is all History now. But just would like to mention the symptoms I was getting for me to see Naturopath in the first place. You see all my Life I have always had trouble getting up/ even waking up in the morning- tired all the time- and I would always be late going to work or anywhere. Going to school my Mum had to keep calling me before I would get up. As you know the docs call it depression, which maybe I would get Depressed sometimes when I knew I was/ am struggling so much with Life. One day in the seventies when I was at work I suddenly came over with Panic- my Heart must of been racing. They let me go home and I went to GP and he said ‘your heading for a nervous Breakdown’. I now know that it was not true as over the years I would read Books and now there is the internet, that I don’t believe there is ‘So called Mental health’ and that a lot of symptoms are Physical in nature. In those early days I would get Panic Feelings and my weight would fluctuate, and one day when my brother visited me he was shocked as I was so Skinny- he said I looked like I’ve come out of Auschwitz. The turning point came in my Life in 1985. Up until then I hadn’t been Ill, except for Chronic Fatigue and catching the Flu at winter time and suffering badly with it. The GP at the time put me on Lorazepam (Ativan) a minor Tranquilliser- the same family of drugs as Diazepam ( valium)- except Ativan are short acting and carry horrendous withdrawal symptoms- for me and others at the time in the Support Group. I was only on a small dose but i went through hell- Panic attacks going on for hours, in fact the tablets gave me Panic- something to do with the tolerance level where your body needs more of the drug- but I didn’t give in to taking more.

I have now, been diagnosed with Hyperthyroidism/ Graves in feb this year , but I did not take the carbimazole and the beta Blockers at the time, as my intention was to make contact with someone who helped himself with natural Therapy. That was what i wanted to do, but couldn’t get round to it due to my exhaustion. Are other people on this Forum neglectful of their health? Or am I on my own with this and you must think I am mad- but when your looking for alternative help its not that its easy and I can just go down the road to see my regular GP- it means emailing the person and i didn’t have the energy or time. Can others understand this? The doctors at the Hospital probably thought I’m mad. Also I get up late in the day and the little energy I have- by time I go out, if i can get out, to get some food shopping in- I just have to lay down when i get in from going out. I just didn’t get round to that email to contact the man who cured his own Graves using natural therapy, so therefore it was left and left until I ended up in Hospital as an emergency. I knew the risk i was taking by not getting on and taking control of my Graves, but i felt stuck and with my exhaustion, I was unable to take control. I was not experiencing any symptoms when I was first diagnosed in feb this year- apart from when at my endo appoint at the time she found my pulse , I think was 120bpm.

If anyone is interested the Book I came across is called Natural Treatment Solutions for Hyperthyrodism and Graves Disease by Eric Osansky, D.C. think he’s also on Facebook and you all have probably heard of him anyway. One of my problems is because I was traumatised all those years ago when I was on Ativan I started to get scared of taking any Prescription drugs at all, other people in the support group felt the same- they called it a’ Pill Phobia’ and thats what I have, but because I,m now in a bad position with Graves I’ve had to take the Carbimazole and Bisoprolol. I remember in the nineties I suffered with Migraines for 10 years, and they would always last 72 hours, no less , but I was terrified to take anything for it- all because of my experience with Ativan all those years ago. It took me some years before I took a painkiller.

Being diagnosed with Graves in Feb this year and not taking anything for it brought me admitted to Hospital on 28th sept. My sister was with me at the time so she took me in her car. I don’t have much energy, never have had, except I know I can talk a lot sometimes- and as I’m talking I know I’m feeling stressed. When I had the incident of racing heart, it just came on out of the blue. There was like a fluttering just running across the edge of my bra, down near my rib cage. The endo seemed surprised that I don’t feel my heart Pounding in my chest, but I feel it lower down near the rib cage When i arrived at hospital they said my pulse was 220 bpm with AF. They kept me in over the weekend. I have lost the letter from endo ( before I went into hospital) which stated the Result of antibodies I remember reading Trab 6. Something? I will get another copy to show you the numbers. I don’t know about TPO and TG antibodies and if they were tested or even what they stand for-haven’t looked into it..

I will say more about this later and what has been happening since I came out of Hospital, except I’m still having trouble with my Pulse and BP.

What I would like to know is- is it possible I’ve had Hyperthyroidism throughout my Life and not known it- because if the doc didn’t test the TSH, you wouldn’t know. I mean, in the seventies when I suffered the panic and palpitations at work- all the GP did was give me Tranquillisers. In fact they never took any Blood Tests in those days- surely they did Blood tests on people? And me being ignorant about the TSH I wouldn’t know to ask. I did mention this question to the Hospital doctor, is it possible to have Hyperthyroidism and not know it, he said yes, because he said The TSH test is fairly new, but when I moved to another area in 1985 i remember having a blood test for TSh and I still have that result today written down 1.4 and now when I was diagnosed was 00.01. then 00.00 I know in Dr. PeatfieldsBook he states that hyperthyroidism is straightforward to pick up with the TSH alone. Also going back to when I was a child there was something wrong with me- this was in the fifties- I sometimes used to get a blotchy rash on my body and doc would say its ‘nerves’- for an 8yr old? And my first day at Primary School i had what i can only describe as a ‘Panic Attack’ as I went out of control screaming for my mum, the teacher picked me up and I pulled her hair out of place her hair was pinned up .

And also when I was 27yrs of age a swelling came up on the front of my neck- i think there was a red inflammation on my thyroid area, I went to local hospital for blood tests and I remember being frightened thinking it was cancer- i asked doc if I would need surgery and I always remember his reply- he said ‘and pigs fly’. Ive since looked up the meaning of that and it means its unlikely to happen- in this case surgery- as of course pigs don’t fly, Nothing came of this either, just like other Health issues in my Life- I never get anywhere. I never asked the doctor for copies of blood test he did as I never did in those days and I wasn’t informed about thyroid Problems.

He never told me anything what was wrong- why I had that swelling on the front of my throat- whatever it was it disappeared and i went for follow, up Blood Test and then was discharged.

But the chronic Fatigue has always stayed with me and has been an issue and has got worse. My sleep pattern has always been sleeping late and waking late. Dr. Sarah Myhill says that this is a feature of chronic Fatigue Syndrome where the sleep pattern is moved ahead by about 6 hours. I wanted to go and see her before this Graves came on, but she is not taking on any more new Patients.

In 2003 I suddenly got ill in the night, I woke up with dizziness and my friend came to collect me and take me to his place- he was always there for me- this went on for months. I first of all went to A&E and all they did was check my blood sugar and i think BP. Just turning my head in bed made me Dizzy, dizziness is one of the symptoms that scares me the most. Also I noticed that whenever i ate I would get Dizzy. I lost a lot of weight, I then remembered a Dr. Jean munro who treats food allergies and environmental illness’s at the Breakspear Hospital. I went there and they immediately started testing me for food allergies, and your given vaccines to take home . the cheapest vaccine to go for was the multiple food vaccine where it contains 100 different foods and this was working for me. Because i could at least eat without feeling dizzy. I then started to put my weight back on. I had all sorts of tests there and one was for heavy metal toxicity and showed positive. I had my amalgam fillings removed over four weeks in 2007, also in 2005 I saw someone who tests your body for toxins etc he was called an automatic response Tester- i think he’s still around- I think he tested with a dowsing rod. I was lying on the couch. Then he turned to my sister saying I am a body full of toxins. He gave me some Homoeopathic Remedies to take away and I had to follow a certain Protocol, I got worse at one stage, I went back again and he said I am not detoxing and that he has to find out why, but it never got to that because I was not able to attend appoints.

When I had my fillings replaced i went each week to the Breakspear to have Intravenous DMSA- whatever that is, I can’t remember now, and when the course was finished I took the DMSA home in tablets, I got really ill and can’t go into that now- so much time to explain. I stopped going to the Breakspear as my money ran out as it was expensive. I received a letter around the same time from Breakspear stating that chronic Fatigue would lead to Heart Failure I would say,. So would untreated Hyperthyroididsm that I fear I may have had all my Life. I told my GP what the Breakspear had told me about Heart Failure and he did a Blood Test called Pro BNP which can tell about the Heart. He did it at the same time he did TSH and the result was 160. I googled it at the time and it stated it has to be below 100- if not, Heart Failure is present. I tried again to look for the website I saw those results and I can’t find it now, I think I read somewhere that they have changed the reference values for that test.

As i said earlier I went to see one of the Thyroid docs on the TUK list of docs It was 2009 and I took everything i was advised, checking my pulse, and after a while i thought let me order another Thyroid Function test from Genova Diagnostics as I was still chronically tired and not seeing any change- anyway all the thyroid hormones were out of range, very high but i was still tired and not having any symptoms of hyper- high pulse. I phoned the doctor and he said i did the right thing to call him with results like that. He asked me how I was feeling etc and to take my pulse, he then said to phone the Lab and ask them to repeat the test and he said tell them their mad- and to let them know that he said so, he said that they must of skewed the results and got my results mixed up with somebody else’s. As looking at my results, i was even thinking they are somebody else’s as I was showing No Symptoms of being hyper- so from that day to this I don’t know what happened there. Neither did the doc- he said with results like that I would have my eyes popping out my head. I phoned the lab as he suggested to do a repeat but they refused saying that the results do belong to me. He just said in the end that my receptor sites must be blocked. This thing about receptor sites has been bugging me ever since, does anyone on your Forum know anything about ‘recepter sites being blocked’ and what does it mean as far as treatment is concerned. I saw him one more time after this in his clinic, but his attitude was that he had given up on me, and that I’m an odd case, I didn’t think to ask him to explain about receptors.has anyone else come across this problem with a thyroid doc and being told their receptors are blocked so therefore there is No help for them?

Because I did ask him why I wasn’t getting symptoms with the high levels of thyroid hormones through the roof- and he said not if they are not getting into the cells-in other words I’m blocked. I did ask my GP recently if he has heard of such a thing about receptors and he said yes, but apart from that he looked confused, I asked whats the treatment for that and he said he don’t know

I also asked my friendly Pharmasist and he told me there are receptors for every drug- Really? Does that mean carbimazole and Bisoprolol would have difficulty getting into my cells- if that were the case then I’ m in trouble. Anyway, going back to that time, his secretary told me with Results like that, that i would be entitled to see an endo on the NHS, so I got an appoint with my local hospital. This was in 2010 ,the endo said I may have tumour on my Pituary gland,but after doing their own blood tests showed that I hadn’t. All the Blood test results came back down to within range and I was discharged from clinic. Now years later in Feb this year I went back to the same clinic as my TSH was suppressed at 00. 00 and I explained that i have always thought i had low Thyroid function with the symptoms i have had throughout my Life. I said that I never got anywhere with the Thyroid Doc previously and she had my records going back to that time in 2009- she asked was it Dr. Skinner I saw, which it wasn’t him and she didn’t ask who it was and I wouldn’t of told her anyway, as I know they are critical of the Thyroid Docs. She explained that why the treatment never worked with the Thyroid Doc is because she feels I never has a Thyroid Problem to begin with. What a nightmare my Life has been- never getting anywhere with the different treatments I,ve tried.

Now I will bring this story up to date and get to the point why I’m posting. As I said earlier I was admitted to hospital on 28th sept my pulse rate with over 200bpm and the ECG showed AF. I explained to the doctor why I never started on cabimazol the reasons being that I was hoping to get an alternative treatment and my fear of taking prescription drugs- I ‘m not sure If they understood my reasons and maybe they thought I’m mad, I also told them I’ve been suffering with chronic Fatigue for decades. It was a Friday evening I went to the Hospital and I came out on the Monday. They asked me what dosage of Carbimazole the endo prescribed- it was 5mg 3 times a day, they then gave me 20mg carbimazole, so I’ve been on this dose since- which will be 3 weeks this Friday and I have been taking it every day-once a day. The book i have on thyroid disorders states that you are started on 30mg carbimazole and sometimes started on 40mg, and if its severe some docs give doses of every six hours, Am I on a big enough dose i ask myself?

When i was in the hospital they gave me a beta blocker, different to the one i’m on now, but I felt slightly dizzy or more so lightheaded, it made me feel afraid and not want to go in the shower as i thought i might faint. There is one thing i can’t tolerate and thats dizziness and I’m frightened of an episode happening again as one time a few years ago i woke up like that, but it was a bad one and i was swaying – i never got it checked out. The hospital doctor then put me on Bisoprolol 2.5mg twice a day.

I couldn’t even bring myself to take the Bisoprolol at the time as i was afraid that it might lower my BP too much- so I didn’t tell the doctor I wasn’t taking it. I came home thinking I might find an alternative to bring my BP down and stop my pulse from racing. I knew I was being stupid and that a natural treatment would take too long to work and that I was feeling poorly- I thought i will go out first for a walk in the Park and see how i feel later when I get back, because I do mostly go out when feeling afraid. When I was out round the shops i knew I was getting seriously ill, since I came out of hospital i’ve been taking my BP at home. When I got home my BPwas just rising also the pulse. I was forced to call 111- when they could see my BP high- even the bottom number was 145, and I’ve never had that reading before- it was high like that when I went into the hospital the first time. Anyway the operator said its an emergency and they sent an ambulance to me- i was on my own and when ambulance arrived I went downstairs to them. They kept me in ambulance outside my flat taking lots of ECG readings. They keep asking me if i have chest pain or am Breathless or in pain- I say No. The crew decided that I will be going to hospital and my Heart was in flutter again. This time the Pulse was not as high as the previous time-but still high. When I got to the Hospital there was such a nice doctor, he introduced himself by giving his first name and not only that, he had a way about him when he spoke he put me at ease. He looked at the monitor and said its looking better now, and my Heart came out of flutter. I told him the truth that i had not been taking the Bisoprolol, but that I took one 2.5mg tab before ambulance arrived. He gave me another dose while I was there, and I was not kept in. When I was in there my BP reading, before I left hospital was a good reading something like 127 over 83- when I got home i took my BP expecting it to be ok but the bottom number was over 100 again- so this frightened me- maybe i have something wrong with my heart.

This all happened on the weds evening- after i came out of hospital- so the following days up until Sunday I was taking the Bisoprolol twice a day. On the Sunday evening I had another scare- I was getting ready for my evening dose, and before I take It i feel i should take my BP before taking the tablet- I took the reading on the wrist monitor, i also have an arm one and the reading was 63 over 31 pulse 88. I have never had a low reading like this before and I wasn’t feeling like my BP was low.I had been out that day and i was pleased I managed to get out. I was feeling my usual tiredness when i got in and had to lay down as usual but also I was restless. I panicked a bit with that reading and googled it- the same reading came up online to do with someone’s grandfather and the next day he died- the article said your heart could stop! I panicked even more after reading this and had to call 111 yet again for advice. I did take another BP reading five minutes later on the arm monitor and it was 170 over 84 pulse 103. I phoned the operator and explained and she said she’ll get a GP to call me back. He called me a bit later and I explained to him my one off low reading and he seemed shocked that I’m on this dose- he reckons I shouldn’t have been put on the dose i’m on straightaway and should of increased gradually- he asked me who gave me this dose, i said the hospital. But when I went to the hospital on the Wednesday doc there said its a tiddly dose. The GP on the phone said he can say his 90per cent sure that dose brought on the low reading and he said he see’s it all the time people collapse in the street with the dose i’m on. So he adviced me to come down from 2.5mg Bisoprolol twice a day to once a day- he said to break the tab in half and take 1.25mg morning and another 1.25mg later in the day. I thought this was a big drop to go down half, instead of say, a quarter, anyway I did what he said, and this all happened last week Monday- so I was taking the one tab a day on the Monday, Tuesday, then Wednesday when i got up that day I said I was feeling a bit better, stronger feeling like to go out, so i went out and before I went out my BP readings were good and the pulse- all the BP readings the top numbers were below 140 and the bottom numbers were below 70- the pulse readings were around 74/76, then when I came back home i took my BP at 9pm and it was 151 over 69 pulse 102. I was a bit worried as I didn’t want my pulse to skyrocket again plus the fact that I had lowered the Bisoprolol. Anyway BP continued to rise and went up to 173 over 74 pulse 110 so I phoned 111 and they said to go along to the A&E- I don’t know why as I’ve had higher pulse before. I was feeling anxious and exhausted and I just want to feel rest and peace in my body. I was thinking at the time- do I need an higher dose of Bisoprolol- the dose i was on, before that doctor brought me down or do I need more carbimazole, or both? Can you give some advice please based on your experience dealing with lots of people with Graves. I know you’ll probably say I have to be asking my GP and endo. When I got to the hospital whilst i was waiting the nurse came offering me a Diazepam- but I had to refuse because of my past experience with Benzodiazipines , I wish i could take something to help calm things- what do you think? All i know is i had a bad time taking them and getting off them- and i remember the support group leader- group was called Tranx that we must not take that drug and she handed out cards to carry on us if we were in an accident not to take them. The nurse said one tab won’t hurt me. The doc at the hospital said to go up to 2.5mg Bisoprolol twice a day- the dose i was originally on.

Anyway the latest scare that has really prompted me to Post- although i have wanted to be in touch for a long time but coudn’t manage- is on Saturday taking my BP readings the pulse was going up- i thought Bisoprolol should bring the pulse down. I worried at the beginning that my BP would go too low, yet on Saturday evening it went like this at 10.50pm BP reading 136 over 74 which is ok pulse 86, then half hour later 127 over 68 which is ok pulse 89- I then at this stage took the Bisoprolol-but 1 and half hour later, after taking my tab, the BP rises to 160 over 77 pulse 97, then half hour later still climbing to 176 over 67 pulse 105. I have to call 111 again, as by this time I’m afraid, knowing there must be something else going on besides Thyroid- as its not normal for BP and pulse to rise, After taking a Beta Blocker, this wasn’t happening last week- I had good readings. I mean its one thing if BP brought down too low, or not at all- but to rise! I haven’t seen this before- hope to hear from others to see If they’ve come across this problem whilst on Beta Blockers- I won’t feel so alone if others out there get the same problem- even though I know it won’t take away my suffering- but its good to share- for me anyway- and hopefully others. I was thinking maybe its my kidneys that caused this, as I read if they’re not functioning properly then BP will rise and having Chronic Fatigue Syndrome my whole Life - must be a reason for it and it makes you wonder what damage its done. Chronic Fatigue is not a diagnosis. I’m not sure, does graves just cause an high pulse, because I have the high BP as well- does anyone else have High BP and Pulse with Graves?

The operator said she’ll get GP to call me, this was Saturday-he called me yesterday (Sunday) we spoke and I said I may need an higher dose of tablet- he said he can’t give anything until I’m seen so he got a local surgery to call me and I made appoint to see their out of hours GP. I went to my appoint with GP she took a urine sample- there was only a little blood in sample but she said she will give me antibiotics anyway and that I should feel better in a few days- i’m to take them for 3 days. She was surprised that the hospital didn’t take a sample of urine when i went the last time. They did take a sample when i was admitted but said its ok

My GP Surgery contacted me to make appoint with nurse to take my BP, so I have an appoint tomorrow. I haven’t received a follow up appoint yet with the endo.

How long will it take to feel better-although I wasn’t well to start with. But at least I never had fast heartbeat- how long before the carbimazole starts to work? And then i may not need beta blockers anymore- with my doctors advice. Of course- as I now know how bad this Graves can get- i won’t mess around again with the meds. Graves just means there are antibodies, am i right? Is it more serious than just hyperthyroidism, because the way I’ve read about it is the treatments the same for both types and I don’t think the carbimazole gets rid of the antibodies?

About carbimazole can sometimes lower the white cell count- the symptom of this- would it be a sore throat i read- then you stop taking it. I feel a bit poorly and I have felt worse in the past, would it matter that I have a cold coming on- its seems like one of those slow developing colds, sneezing, runny nose- is it ok that i continue with carbimazole- I hope so.

Its been a bit of a long Story- i hope you don’t mind and that I get some reply’s.

Look forward to some help and support Thanks.

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Rosie20152017
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farranccc profile image
farranccc

You will definitely get some replies - they’re a good bunch round here!

But that is literally the longest post I have ever seen! It is like a mini-novel!

I expect you would get more responses to your questions if you kept it a little shorter... but sometimes just writing it all down provides some therapy.

All the best

Rosie20152017 profile image
Rosie20152017 in reply to farranccc

Hello farranccc,

I didn't think my post is the longest post, as I checked this out before posting, by looking at other people's Posts, and i did/have come across long stories. And being new to this forum I wasn't sure how long it could be? I guess the admins would cut it short if it went on too long? I'm also new to posting on any Forum.

Also, for me, its not just about asking questions like making bullit points, its about telling my story (first time) as I won't have to repeat it again. I thought this is what the Forums are about anyway- 'to tell us about yourself' I like to hear people's stories and am interested, even though you may not like to read 'a novel' other people may not mind.

As i said in my Post- my story had to be told- because I have not got anywhere with my Health and hopefully someone out there has come accross the same brick wall.

farranccc profile image
farranccc in reply to Rosie20152017

It was only supposed to be a helpful suggestion. No need to be rude.

The great people here will not be able to give you a diagnosis - that is one for your Doctor - but they will offer support and advice if you are polite.

I wish you all the best.

Ps; by admission it took you months to write so perhaps that is feedback in itself!

Rosie20152017 profile image
Rosie20152017 in reply to farranccc

hello farranccc.

I'm sorry if I offended you and that i came accross rude, as I'm not normally a rude person. I guess i must of took it that you were being rude by saying post is like reading a book- it is very long and at least now I won't be having to write a long one again. Someone did tell me that I got your comment wrong. Anyway I've only just turned my computer on in two weeks and been able to reply due to- being so tired and sleeping sometimes. The first notification that came up on my emails was sally56- so I replied to her first- I don't know if its gone through as i did click on the reply button- i will check.

Anyway, i also wish you all the best.

JanW profile image
JanW

Hi Rosie, I’m 65 have thyroid, autoimmune problems, recently diagnosed with fibromyalgia, not easy getting older is it. It also can’t be easy loosing your best and only friend after 30 years, I know how hard it’s been for my brother who lost his wife to cancer a few weeks ago. Hard is not the word, it’s a life changer of the worst kind and like you he is finding it very hard. As I read through your letter as well as your illnesses I started to wonder if you could be having panic attacks and suffering from depression? This would be a normal reaction to loosing someone close to you.

Have you considered talking to a bereavement councillor? My brother did it really helped him. I worked for the Samaritans and trust me they are not there only for emergencies they are there for people who just want to talk, any time of the day or night. Age U.K. are also very good and you could ring and enquire about their befriending service, i.e. a volunteer comes around for an hour or two each week to visit – chats cup of tea cake. No shame in reaching out to people Rosie as you have done in your letter. As for the medical side of things I will leave it to those more experienced on here to hopefully get in touch. Good luck.

Rosie20152017 profile image
Rosie20152017 in reply to JanW

hello janw

Sorry for the delay in getting back to you, but as I've just explained in my posts to others on here-who replied to my Post- that I have just put my computer on since that time I posted- and have just looked at the replies. I've been tired a lot.

Sorry to hear about your brother losing his wife-only a few weeks ago. Your right, its the worst kind of life changer- its just final and I won't see him again- not in this Life anyway- hope theirs a better world than this somewhere that a lot of people talk about. About getting old and that not helping- i wish i could say that because of my age- but unfortuantely I have had tiredness and sleep problems for years, but I understand what your saying about age- as when people see my age-or anyone's age- they automatically say it must be our age. I don't know what i was thinking when i wrote my post........ it is soooo long. i know this isin't a forum for counselling, but i suppose i was thinking that someone could pick out the questions? points i was making- i don't remember everything now, that i wrote- I thought the admin would just welcome me on board and just say hello? I am not being critical of the admin staff or people on the Forum as I can see they are all doing a Great job with supporting people-its just that I haven't received a reply from admin, and I do now understand about my post being so long and they don't have the time to read it all. But one reply gave good advice-two replys, I think saying I should break the Post down and be clear in what i want advice on. Thats what I'll have to do when I feel up to it. Right now I just need something to get my brain into gear- I stopped drinking tea and coffee because a doctor told me to at the hospital, now I want to go and make a tea.

I did suffer panic attacks in my late twenties and I had to leave my job because of them. my main complaint was that I couldn't wake up easily in the morning- they gave me Ativan when maybe it should of been an anti-depressant. Anyway, years later when i did take an antidepressant- it never agreed with me. Years later i read a womans experience with chronic Fatigue syndrome and she stated with this illness that we don't tolerate drugs well, that would maybe explain why I had an hard time on the Ativan, all those years ago.

I did have talking therapy for three years during the nineties, it was then I realised that I had a physical illness and someone did tell me that 'your body keeps letting you down'.

But thanks for your advice anyway about Bereavement counselling, but it has been three years now that my friend passed away- when it first happened i was in a dark place in my mind and a cloud over me- now its not so bad, but i still replay the trauma over in my mind- around the circumstances of his death.

I like the idea of Age UK- i might get round to that one day of contacting them, but I have other things going on at the moment.

Thanks for making the time to reply and for your advice and for being kind.

I wish you and your family, especially your brother, who has lost his wife- all the best for now and the Future. Rosie.

JanW profile image
JanW in reply to Rosie20152017

Thanks for that Rosie I wish you all the best.

Jazzw profile image
Jazzw

Your lengthy post, your reply to farranccc - both are diagnostic in themselves. I don’t think I’ve ever seen a longer, more convoluted / more confusing post and I’ve been here for years, one way and another. :) It really does demonstrate what untreated hyperthyroidism can do to your thought processes. That’s not a criticism - that’s my heartfelt “poor you, you’ve been through such a tough time” response. xx

You most definitely have an overactive thyroid but get out of your head that it can be fixed by doing anything “alternative” - if it could, many of us would be doing that.

The overlap of symptoms between under and over active thyroid are well known. Your body is running at a billion miles an hour so you’ll be exhausted. Your heart rate will go much too fast.

More here about it: thyroiduk.org/tuk/about_the...

Honestly, being blunt (which is unlike me but on this occasion I’m going to do it!) what you need to do right now is follow your doctor’s advice. Not go hunting for other solutions and considering any alternative therapies. You need to follow the recommended treatment - take the carbimazole and the beta blockers. Stop obsessively taking your pulse and blood pressure - in doing so you’re just adding additional stress, making yourself prone to panic which will, you’ve guessed it, raise both pulse and blood pressure. Trust a doctor. Just this once. See the same one so he/she can follow your progress and make adjustments.

Every time you switch something, every time you stop taking prescribed meds, or you try an alternative therapy - you just confuse the issue. No one can help you while you’re doing that because it means there can be no baseline and no one can figure out what on Earth to do next. You need to consistently follow advice for a while and put your trust in a doctor - so identify a GP you can trust and go with his/her treatment plan.

Yes, sometimes here we berate GPs - but that’s usually about their knowledge about treating hypothyroidism. Overactive thyroid issues are different, much more immediate and need careful handling.

I wish you all the very best.

Rosie20152017 profile image
Rosie20152017 in reply to Jazzw

Hello jazzw

Thanks for your reply and sorry for taking so long to get back as I've only just gone back online today. I am taking the carbimazole and betablocker as I know if i don't I will get into difficulty again with my pulse going high - the only time i cut the dose of betablocker in half was when i came out of hospital and got a low BP reading- i panicked and called 111 for advice- the GP called me back and told me off for being on what he called 'an high dose of bisoprolol'- he asked who prescribed the dose i told him the hospital. I took his advice and cut the dose down, then three days later I had to go A & E again with high pulse and BP and told to go back up to the original dose. So I won't be doing that again- i know I must stay on them until a doc tells me to stop. I have mentioned all this in detail in my post, but I guess that nobody has bothered to read it as it is soooo long and I apologise- and I've been adviced to shorten it and to state my question/issues, which I will do soon, I hope.

I do understand when you say not to switch a medication as no one would be able to help me as they wouldn't know whats what- but trust me, i am very careful, only doing one 'experiment' at a time-so to speak- my sister was suggesting some years ago 'why can't I do a detox and take Dr. peatfields thyroid prescription'- in other words do both at the same time. He and I knew that you couldn't do this as he said 'we won't know whats happening- we won't know whats working and whats not.'

Ok, I'm sorry if it sounds like i'm going on, but I am trying to make a point that I don't think i said in my very long post that I switch medication- I do remember saying that Peatfields treatment didn't work (for me)- I am not blaming him- just saying I was still left with the Chronic fatigue after taking the natural dessicated thyroid and the Adrenal support- and the results of the blood test at the time showed very high thyroid hormones but I was not showing any hyperthyroid symptoms- this all happened 2010. He couldn't make out what was happening at the time and asked me to request another Blood test as lab must of skewed the results- they wouldn't repeat the test-saying the results are mine and not mixed up with anyone else's. As I said this is all in my Post. He eventually said 'my recepter sites must be blocked'- he never explained what this means as far as treatment is concerned or whether what help there is for me (if any). I didn't think to ask and it was just left at that- He just gave up on me and that was the end of any future appoints with him, must have a wonky chemistry- suppose I will Google it one day- this thing about recepter sites has bothered me ever since when i think of it- as I don't like to be ignorant. I wanted to ask the Forum has anyone been told what I was told by a thyroid doc or an endo and if so what to do about it as it must mean that the medication is not getting through the cells- this is what Peatfield told me anyway- what was happening at the time.

Sorry for the bit of the long post this time, but I just like to get my Story straight- that I have never switched and messed around with medication- as I've just mentioned- the meds didn't work and i stopped- as Peatfield and I knew that they were not doing anything for me- so he told me to stop taking them which I was about to anyway as my thyroid hormones were through the roof. Rosie.

I also wish you all the very Best.

Jazzw profile image
Jazzw in reply to Rosie20152017

Hi Rosie

Re the T3 receptor issues, this will be what he meant yourhormones.info/endocrine...

It does happen occasionally but it’s not always clear why.

Re everything else - honestly it’s fine and we did truly understand and feel for you. It’s horrible when you just can’t get any answers or find a way to get well. This isn’t a forum like the old type of forums though - you know, the ones where you start a thread and people see updates every time you post. Instead, this one moves very quickly. So the admins don’t necessarily see every post - they do their best but some days there are 100s of posts and it takes quite a bit of doing to read them all! There are only a few of them so other users tend to drop in and try to answer posts where we can - but honestly, there are far more people who post for help than there are people why try to provide the help so it’s a never ending battle to keep up!

Best advice I can give - read the posts here as they come up, even if you can’t add any advice (and please don’t feel that you need to). Over time, almost by osmosis :) you learn loads about thyroid conditions and what sort of changes you can make to try to make a difference to your health. I’ve been posting here on and off for around 5 years now, possibly longer but even now I’m learning new things every day.

If you’d like help with something in particular, it’s best to ask a question to target one or two issues, rather than ask everything at once - you can post as often as you like. Start a new post each time you have a new question because people will spot new posts - the forum isn’t set up to show when people have responded to old posts - it’s an odd quirk and it took me a while to get used to it, being a veteran of the other type of forums in the past.

Hope that helps. I promise you’re really welcome here and that people will do their very best to help if they can. :)

Rosie20152017 profile image
Rosie20152017 in reply to Jazzw

Hi Jazzw

Sorry I've taken so long to get back to you again after your reply to my previous post (10 days ago). I replied at the time to valerian's response to my post- as valerians was at the top of my email notifications- the latest email, and by time I scrolled down to other notifications from healthunlocked and saw your reply I was then too knacked to answer anyone else, its not that I'm ever ignoring anyone its

just that I'm tired most of the time and don't often switch the internet on.

Thanks for your reply and welcoming me here, also thanks for the link you sent- I haven't opened it yet, but will when I get round to it. I'm sorry for what I said in one of my posts about the admin not saying hello and sounding like i was being critical- but I was just winging- I was feeling bad about the first reply I got from farranccc and was a misunderstanding on my part- but its the past now and I'm alright.

I understand now, that the admin can get 100's of emails some days and not having enough Staff to read all the posts coming in - if I was well enough I would offer some help, but I don't have internet skills. I will drop in when I can, and if I can offer any advice to anyone or relate to how someone is feeling- then I will- but looks like there are others on here with years of experience with thyroid problems and better able to give advice.

I do receive email notifications from healthunlocked when I receive a reply to one of my Posts- and i also get other notifications when new posts come in- I don't know about Forums in the Past as although I used to read the Posts, looking for advice- i never felt ready to join. There used to be a Forum called herballure- its another name now- where they talk about mercury poisoning from the amalgam fillings people have in their mouth- website is based in U.S. Healthunlocked is the first time I've joined a Forum.

Also can you help- how do I go about looking for my Posts on the website. i did see a Post recently asking the same question. I thought I should click on my 'face'- the 'icon' face- where it says my name Rosie20152017- there is a drop down box- but I can't see where I would look to find my Posts. I needed to find your reply to me, so that I could then reply back. I had to take the long way round, by signing-in to my emails. then scrolling down to the notification from healthunlocked with the link to your reply. Is there an easier way?

Thanks and all the best, Rosie.

Jazzw profile image
Jazzw in reply to Rosie20152017

Hi Rosie - don’t worry about taking a while to reply xx It’s not easy when you feel so rough.

At the moment, you’ve only written the one post - this one. You’ve written quite a few replies to those who’ve commented on it but they’re all here on this “thread”. You’re right in that you click on your user name. It should then show you “Posts” and “Replies”.

It’s perhaps best to start a new post or rather a new question if you want it to be seen. People don’t tend to come back to old posts unless they can see (as I did) that you’ve replied to them. I get a little alert at the top of the page which shows me I need to go and check back on a post. If you click on it (it’s a “bell”) it’ll take you to the post. But if I hadn’t seen that, I wouldn’t have known you’d replied so it tends to be best to start a brand new topic so that people see it and reply.

Hope you’re doing a little better xx

MaisieGray profile image
MaisieGray

Your post filled my PC screen x13, so yes, very long. It can sometimes help us to write things down and in doing so I hope it was beneficial for you. Unfortunately though, the forum isn't designed to offer counselling or therapy, and help you unpick the progress of your life and health. It's populated by unpaid volunteers who have their own health issues, who may or may not be feeling well but who nevertheless offer assistance on thyroid and associated matters; and who may simply not have the time or energy to unravel from all that you have written, what are the key concerns troubling you. And consequently it's likely to be difficult to offer help. What might therefore be useful is if on a separate post you could summarise from what you've written here, where you are at now, health & symptom-wise, and what advice you need, so that members might understand more clearly, what you need to know in order to make progress.

Rosie20152017 profile image
Rosie20152017 in reply to MaisieGray

Hello Maisiegray

Sorry its taken so long to get back to you. Due to tiredness and sleeping, i haven't had my computer switched on. Thanks for your reply and I understand now about my post being so very long and that there is so much to unravel. I can't even stand looking at my post now- I scroll down through it so quick- I am a little embarrassed now for writing all that and feel stupid. I don't know what i was thinking when i wrote my post........ it is soooo long. i know this isin't a forum for counselling, but i suppose i was thinking that someone could pick out the questions? points i was making- i don't remember everything now, that i wrote- I thought the admin would just welcome me on board and just say hello? I am not being critical of the admin staff or people on the Forum as I can see they are all doing a Great job with supporting people-its just that I haven't received a reply from admin, and I do now understand about my post being so long and they don't have the time to read it all.

I will do what you've adviced to write a seperate post with just brief question about thyroid issues- but I don't feel up to doing that just yet- as I'll have to read through my long post again to refresh my memory what it is i want to ask- to get to the point this time, and this time it won't be my life Story again-thats done and dusted. I am tired now, and must go and try and get some Rest.

There is one query now I've just mentioned in a post to jazzW- as she replied to my post and i replied back- its about recepter Sites- if anyone has come accross that problem- of being told they are blocked.

Thanks again for your good advice about keeping the post short in the Future.

This is my first time i have posted on any Forum, so i didn't know how it all works.

Rosie.

bantam12 profile image
bantam12

As others have said there is to much to read, it's difficult to process all that information and come up with advice for you.

Rosie20152017 profile image
Rosie20152017 in reply to bantam12

Hello bantam12

Sorry i'm a week or so late in getting back to you.Thanks for your reply. Your right- my post was much too long- I understand that now- suppose i just wanted to tell my Life Story and some questions thrown in the mix at the same time. At least I won't have to be doing that over again.

I will be following Maisiegray's advice about posting.

Thanks again.

Rosie.

Espisnowwoman profile image
Espisnowwoman

Hi rosie. I to suffered for 21 years with hyper/graves and iam so sorry to read that you are sick. Graves can also make you tired with no energy. I was blessed that menopause put me in remission not to mention god to. Prayed every day to be at least semi heathly. I still have high blood pressure as i take 350 mgrams of meds everyday 3 times a day. I will pray for you as i do for everyone on this great forum!

Rosie20152017 profile image
Rosie20152017 in reply to Espisnowwoman

Hi Espisnowwoman

Sorry I'm late in getting back to you, but I've had my computer switched off and have been feeling tired and sleeping sometimes. Thanks for your reply and praying for me. I try and pray sometimes- if you can call it prayer- I just speak to God asking for help and support. I don't have any Religeon and i do believe in an higher Power- but it makes no difference to me as I can't 'connect'- I have always felt 'blocked'- if that makes sense.

I don't think I'm allowed to speak on this Forum about Spiritual Stuff, but just to say i went to Lourdes once and I told the priest that I don't feel any connection when i pray- and he got a bit annoyed and said that no-one does. Also i think when someone is ill it is difficult to pray, so most of the time I give up. But Thanks anyway, i appreciate your praying for me, I will do the same for you too. Rosie. XX.

Espisnowwoman profile image
Espisnowwoman in reply to Rosie20152017

Please dont give up on praying.god hears everyone ans sometimes our prayers dont get an answer right away but god works behind the scenes. I know how u feel about being sick. Being tired comes with gravesand i was there to. Just dont give up.

Sally56 profile image
Sally56

Wow Rosie,

I feel so sorry for you. I hope writing it all down was cathartic. I know when my brain is fogged and I am fatigued, I feel overwhelmed, like my life is out of control. I get anxious and depressed and I find comfort in writing down everything, it makes me feel more in control if I can see it on the page.

I do not have graves disease so I don't know what you are specifically experiencing. I was mis diagnosed with Chronic Fatigue 30 years ago. I was also diagnosed with General Anxiety Disorder with panic. I have been addicted to valium for 20 years.

In 2017 I had my thyroid removed and I have a rare adrenal disorder so finding the correct medication has been my quest. This journey I have taken with the good people of this forum. Without their advice I would not be typing now.

I must stress, that as others have posted, you must cooperate with help.

Your terror comes through in your words. In reading your post I felt moved to reply because of this.

You need to speak to a professional (Psychologist/Psychiatrist) about your pill phobia. I have suffered with phobias myself, they are real, but they sabotage your life.

I think you're in England? I am not sure of the NHS process there (I'm in Australia) but you need to conquer your phobia so your fear won't sabotage your need to be medicated.

Like the others above, I say this with care and good intent and also as someone who has a Psychologist in her life and who gets scared as well.

Rosie20152017 profile image
Rosie20152017 in reply to Sally56

Hello Sally 56- thanks for your reply and all the others who have answered. Sorry I've taken so long to get back- the reason being that i don't have internet on the go-i.e. a smart phone- I just have my laptop which is enough for me and i just turn it on now and again. I know i should of switched on the next day after posting, but i did have to go GP Surgery next day to get BP check also I seem more tired than the chronic fatigue that I've had for years- now that I'm taking the Bisoprolol and Carbimazole. The first dose of the day of both meds-after taking them, and sometimes the feeling comes before i take them- I've had the feeling before years ago when diagnosed with low Blood sugar- the feeling that I'm going down- and i'm thinking when it happens- is it my Blood sugar or BP? A few moments before I feel Ok- strong then I get feeling weak. I eat something, even though not hungry much and yesterday I just had to go back to bed and I slept for couple of hours. This is the reason why I haven't been able to go on the forum soon after I Posted.

Also looks like someone on here thought i was being rude when I said that they might not like reading my long post- I wasn't being rude and I will Post to him/her and apologise- maybe I thought they were being rude when saying my post was like 'a mini novel'- I may of took it the wrong way. As I said I've just turned my computer on in two weeks and looked at my emails and your reply was the first notification that came up- so I replied to you first- I'm new on Forums and I'll have to look around to see where the other replys are to reply to. I'm sorry to hear about your suffering does the valium help with your anxiety? As for me, all those years ago- the Ativan gave me panic, maybe because they were short acting. My latest worry is my Pulse rate and i don't know if the admins have replied to my first post yet- as if I remember they can advice and so can others who are experienced with hyperthyroidism/ graves. Going from having high pulse, its good thats its come down- but the last few days its been in the 60's, and yesterday I was super tired and sluggish- I've only been on carbimazole- coming up to five weeks- and the beta-blocker I've been on for about 2/3 weeks. I looked in Dr. Peatfields Book and he says that Carbimazole works quickly bringing the Thyroid Hormones down, but sometimes- as you all know on here that I could become Hypothyroid- could anyone here please advice- because Peatfield says your Pulse would be 60 and you would feel tired and sluggish, which I did feel yesterday- I felt terrible. I picked up in the evening and today I felt better, until I did my BP and pulse- my pulse was 59 when i got up a few hours ago. I haven't taken my tablets yet today as I got scared- I know I have to and that i shouldn't stop them without docs advice, but I will take my pulse again before I take the Carbimazole and Bisoprolol- what happens if its still 60ish pulse? Dr. peatfield says in his book that in his opinion he would stop the tablets for a few days or lessen the dose. I have appoint with endo this thursday and yes I am in England- as you asked. Thanks for getting back to me and for your time and I appreciate everyone here who has answered- though I haven't got round to reading the replys yet.

Sally56 profile image
Sally56

Hi Rosie20152017,

I'm sorry that you are still unwell. I think when you see the Endo, it might be helpful to write these issues down to tell him/her. I know low pulse can be hypothyroid and fatigue of course. But not being an expert on Graves or on medication, I can't advise very much.

In my previous reply to you I mentioned your pill phobia and perhaps speaking to a mental Health Professional.

Valium was prescribed to me for sleep, that is how I got addicted. My anxiety was helped with an organisation which is worldwide called GROW Community Mental Health. It's a 12 step program and it saved my life. I don't know the U.K. very well but I used to live in Brighton and there is a GROW group there? mindcharity.co.uk/the-mind-... Its free, they might have a group near you. However I do stick to my previous advice of cooperating with help. Your Endo can help and your GP (local Doctor) can help you find a Psychologist or psychiatrist as well. I still sense your confusion and desperation Rosie, reach out for help. Tell the Endo you need help.

I'm sorry I can't help you very much. Do reply to the others, the admin here are great and so knowledgeable. They usually ask for some results for TSH, T4 and T3, so if you can post them, they can advise you more. Good luck!

Valarian profile image
Valarian

Hi Rosie, to pick up on some of your points:

Although some people with Graves' (including myself) do go through phases of being quite literally overactive, these tend to be in short spurts, followed by complete exhaustion! I didn't exactly feel full of energy when I was first diagnosed, it was more a compulsion to get things done.

A lot of people with Graves' do start on 40mg/day of carbimazole (or even more). However, the initial dose will also depend on the thyroid levels. You should have blood tests (at least TSH, FT3 and FT4) done every 4-6 weeks ot thereabouts at this stage, and the results will help the endo decide whether your dose needs amending. Do you have results and ranges (typically in brackets after the test result) for FT3 and FT4 ? Have you had antibody tests (TRAb or TSI) to confirm Graves'?

Sometimes it seems that people have become accustomed to their heart rate running faster than usual, and aren't really aware of it themselves. Blood pressure can be raised, but sometimes in people who are hyper, there will be a wider than usual gap between the two measurements.

Carbimazole starts to work straight away, but it can only prevent production of new thyroid hormones, it can't deal with what is already in the body. This means it may be several weeks before you begin to feel much better, although the beta blockers should at least take the edge of some of the most uncomfortable systems. The side-effect you refer to, which affects white cell count, is pretty rare, but we are all warned about it because it is potentially so serious. The main symptom is a sore throat and/or mouth ulcers, I gather you would also feel pretty ill, but this isn't an everyday cold. If you have a sore throat or mouth ulcers, you should go to your GP surgery (or even A&E if it's out of hours), and explain that you have a sore throat, and are on carbimazole. They should then arrange for you to have a blood test, and you should ask when to phone for results.

Graves' is different from other causes of hyperthyroidism because it is an autoimmune disease, which can't be cured, although it may go into remission (typically with the aid of antithyroid drugs eg carbimazole). You would normally stay on carbimazole for 12 -18 months, after whch they would take you off the medication to see whether your thyroid results remained within range (ie whether you've achieved remission). If not, they may need to look at other options, including radioactive iodine treatment or thyroidectomy, but for now, you don't need to worry about these, but focus on taking your medication with teh aim of achieving remission. I'm sure it won't be easy to stop worrying, because anxiety is itself a symptom of Graves'.

Hope this helps.

Rosie20152017 profile image
Rosie20152017 in reply to Valarian

Hi valarian,

Thanks so much for your reply and info- I never knew that Carbimazole can only deal with the thyroid hormone thats being produced now, and prevent it, but cannot do anything thats already been produced - now I know. I know that I'm finding it hard now to know what to write- as I mostly feel deeply tired inside. I just can't do much in the day and my sister cooks and helps. one day last week I felt a bit strong, and then I go down again. I think there is more going on with my health than just Hyperthyroidism as I go back a long time when I was seeking help- I had lost a lot of weight in 2003, woke in the middle of the night very dizzy ( I have suffered dizziness on and off) but didn't go to GP- only the first time when I got dizzy I went to A & E at that time- I also couldn't eat and my weight went down to below 8stone- everytime I put food in my mouth I would get dizzy- it was like a living nightmare. I remembered a doctor who I read about and I went to the Breakspear to see her- you may of heard of the Breakspear-as people on the Forums are well informed- you have to be when you have suffered a lot. She diagnosed I had multiple Food Allergies and the nurse said my immune system had broken down- Doc gave me supplements to take and I had to inject myself with a diluted form of all the foods I was sensitive to. As the months went on I was able to eat with the help of the vaccines and I put my weight back on. But as time went on I had to stop going because of the expence and the amount of debt I was getting into- I then had to pay off all the money I borrowed for my Health. I don't mind paying for my health- If i have the money- because who likes to suffer and live in Hell with not much quality of Life. Anyway just to give you a little idea of my story- which I did Post a very long Post- too long.

I have lost the original letters the endo sent me in February this year when I was diagnosed with Graves- I threw a bunch of newspapers out for recylcling- I think my Hospital letters must of been amongst them. I have an appoint this thurs with endo- do you think she will give me copies if I ask? Don't see why not, I have had copies of Blood results before when I asked GP- I could then Post you the results of the TFT, if you don't mind, as I've read somewhere on this Forum that some people could be told they have Hyperthyroidism when In fact they have Hashimoto's- or both!? something to do with the TPO? i think and that you have to have the correct antibodies tested. I'm sure you will know the answer to this. I'm sorry I haven't checked this out yet- the meaning of TPO as I'm too tired- i just want to get better. But going back to the missing Hospital letters- the first one showed high - T3? or was it T4? and i remember the number was 30 something- she said I have Thyrotoxicosis- she said she was waiting for the antibody result- few weeks later I received the second letter saying I have Graves and I remember reading the letters Trab but I don't remember seeing TPO. I must get another copy of those letters.

I just want to say, that I think my untreated Food Allergies all these years must of caused the Graves, as the other patients in breakspear at the time say antibodies attack when your reacting to eating a Food we are sensitive to. Now the antibodies have attacked my Thyroid.

Just want to say does anyone feel heat in their body, or even yourself? I think its one of the symptoms of the graves- what an horrible name for a condition- then again I think its the name of a doc who discovered the illness- someone told me this. This heat- its not if I'm sweating- its just a feeling of steam just under the surface of my skin- if that makes sense.

Thats another thing, I don't ever (hardly) Perspire and that must be bad for you- if you don't sweat. Even years ago when I was always tired with the chronic Fatigue Syndrome/ and still am tired- I'm a bit worried because my fatigue seems worse now that i'm on prescription drugs= carbimazole and betablocker - a nurse told me when I was in the Hospital that I could even be more tired now taking this medication. When you take tabs for a condition, its like you exchange one problem for another problem. I'm not being negative I'm just trying to make a joke to myself about it. Not that everyone gets worse, but maybe some do- but you will see from my first Post that I left it too long to try a Natural way- because of my tiredeness i couldn't organise any treatment for myself- besides I wouldn't of attempted it on my own, because the author of the Book on natural treatments for graves states that you have to find someone knowledgable about treating graves to work with, and I don't know of anyone in this country - UK- so people end up having to take carbimazole.

Thanks. Rosie.

Valarian profile image
Valarian in reply to Rosie20152017

The thyroid hormones stored in your body will be used up over the next few weeks as the Carbimazole restricts production of new hormone.

Most of us feel truly awful for the first month or so . Feeling anywhere near normal may take several months, but within a few weeks, you should feel substantially better. Get plenty of rest, eat well, and try to avoid too much stress. People with Graves’ are often sensitive to heat, throwing open windows when everyone else is reaching for another jumper !

TPO is an antibody found in 95% of people with Hashimoto’s, and 65% of those with Graves’. TRAb is specific to Graves’. If you live in the U.K., you have the right to copies of your blood tests, and your GP’s receptionist should be able to print them off for you. Antibodies are typically tested when you are first diagnosed, then maybe again towards the end of treatment.

TSH, FT3 and FT4 should be tested every 4-6 weeks at the outset, less frequently as your thyroid levels come back within range. FT4 will probably be the first to drop, followed by FT3. TSH is usually low to vanishing initially, and is likely to stay there for quite a while. TSH is a signal produced by the pituitary to tell the thyroid to produce more hormone. As hormone levels rise, TSH drops. In Graves’ the antibodies mimic, and effectively take over, the role of TSH.

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