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.
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
High blood pressure and pulse following TT
Low pulse and Aniexty now (on top) of earlier sudden and vicious fatigue 
I have stopped taking Levothyroxine for a month now and my pulse and BP are elevated has anyone successfully quit this drug?
Graves disease hyperthyroidism advice
Possible Hyperthyroidism/graves--hashimotos thyroiditis
