Im sooooo angry, im jumping and spitting, long blogg please read x

I find myself in a dilema and not being treated for hypothyroidism hashi or graves. ( MY history)

In the year 2010 I was bitten by a tick, before then I ended up at the gp for weight gain, brainfogg, facial hair and missed periods and exhaustion, was told TSH normal and probably depression/ anxiety as this has been my past record, ( not anymore)

I carried on refused depressant meds because i didnt feel depressed, In August 2010 I developed right flank pain, that would come and go, as well as water infections was sent to consult with the gastro doc who sent me to the gyni nothing found diagnosed with IBS.

whilst waiting for the gastro appointment I had a chest injury and was diagnosed with chostrochonturitus, no xray just examination, the gyni still wanted to persue with futher investigation so did the gastro, to make sure my symptoms were not pathology related.

nothing found was diagnosed with acid reflux and indigestion ( i dont have heart burn or acid in fact I have low acid.

I continued having symptoms I went bact to the docs and diagnosed perimenapouse, by this time I kept getting respitory issues, missed heart beat losing weight. Doc ran a ecg and it was showing abnormality was sent to hospital, blood pressure high then low anyway I was found to have small amout of fluid around the heart and was told a angiagram would be a good option ( stilll had symptoms) months went buy weight loss allergies, intolerant ot chemicals, kept jumping at the slightest noise

paid private to see ENT consultant as I could not possibly go back to the gp with another symptom, he conducted a nasal endoscopy, without my concent, he put numbing cream up my nose and i thought it was spray to clear my sinuses ( did get my money back) later that eve my nose and throat was torture burning, hypersensitive and swollen nasl passage ( sinuses still present) I perservered and said nothing.

I had angiagram and that went wrong I lost a huge amount of blood ( caused low iron)

Still having symptons, went to see a chiropracticor who knackered my ear argghhhh she felt I had a old compressed fracture on my spine, which showed on xray.

My weight was still dropping regardless of what I ate felt like i was being choked and my neck would swell, then I was exhausted, muscle pain, hair loss eye issues and so on.

Gp sent me to hospitol for them to find out why I was loosing weight, they felt a babarium swallow should be done, even though I insisted I did not have swollowing issues then I was sent home, arghhhhhhh,

went back to gp as instructed by hospitol, to check bones and muscles, back to the rhumi who diagnosed fybromyalgia, The ent did a mri of my ear as I had hearing loss and tinitus ( then discharged arghhh) said he would send for me a year ago.

I sent for private blood test showing tsh high normal and high thyrroglobulin antibodies and avised to see gp, gp didnt have a clue wouldnt send me to endo, I paid private and was diagnosed with autoimmune thyroid low vitamin D and iron and he asked gp to trial elroxin, she wouldnt, so I paid to seek nhs endo, who was furious I went private ( had no choice) I also had cortisol results that show high cortisol all day and elevated DHEA.

my liver was also elevated, gp ignored, started on eltron 25mcg after a year to get it, it made me worse, my blood test showed hyperthyroism ( still no medication) I was left to sink, under my ear and down my neck had become issues gp ignored ( no more test arghh is it me, or was she the one who sent me for test and wasnt it consultants that wanted futher test for reassurance,

still flicking hypo hyper thyroglobulin antibodies trebled, now intermittand stabbing pains in my head arms and legs, i cant comb my hair even my finger tips scream ( lol) thorugh this site I became more knowledgable, back to the gp, she asked me to go and see a srink many times, I refused, in the end I went, I was confident enough, he was going to see that I had unreloved issues, but oww no, diagnosed me with health anxiety and told my gp not to send me for any more test, as you all can imagine my horror, I did write to him and later he replied in a positive manner,

by this time I gave up, I give up fighting and my man friend had died and I had to stay strong for the wife. I still getting symtoms missed heart beat sugar cravings, left neck pain even my veins scream intermittant, now my bones have started to crunch and grind.

I paid again to see a great endo who has instructed gp to trial me on t3 when iron has normalised. phew nearly there.

took a month went to gp this morning and told her about my hyper and hypo and bone pain intermittant atabbing head pain, breathlessness, and neraly fainting episodes. I was ignored, was told my MRI scan of ear was normal ( this was before I had symptoms) I asked would they have looked at my neck, ow yes she said, some of your issues are fybromyalgia!!!!!!!!!!!!!! She said lets wait till you have more blood test> ( what the hell) what a f........ journey sorry, I dont normally swear, Im fuming, still lump under my ear, intermittant hypo and hyper and left ( blood test suggest hypo 6 . something. Here I am typing and I am so angry, I am sorry to rant its stinks, any suggestions, having to sell my car for money for a scan on my bones and under my ear.

I have missed bits out , we are now in 2013 and I am becoming really angry now. Happy reading

love Merissa xxxx hope it make sence my case got snow balled through no fault of my own. offered tons of pain meds.

15 Replies

  • You said you had hypo symptons and then were bitten by a tick. Do you think the tick bite is relevant, or have I missed it in your post. Lyme's disease can be caused by tick bites, but I am sorry I know nothing about its symptoms but feel sure someone else will pick up the thread.

    Best wishes


  • OMG I cannot understand how you've coped with all of this. Your treatment by the NHS has been appalling. I'm not medically qualified but it does sound like you have definite problems with your thyroid. The tick bite, however, stands out. Have you been checked for lyme's disease?

    I wish I could help you somehow, but I don't know what I can do except to read your blog and send you a million hugs. I really hope the T3 works for you. I am on it and feeling so much better, but it takes time.


  • One of my Doctors thought I had Lyme Disease as the symptoms are all similar but I've never been bitten by a tick. Definitely get checked for it! It is very under diagnosed.

  • Mary's suggestion of lyme disease is good. Did your GP/Endo no do a test for lyme? They should have.

    This is a link

  • Thanks shaws, I have been tested but it came back clear, I can cope with some symptoms but not the neurological ones. xx

  • That's good you have been tested. Many people get neurological symptoms which are very unpleasant and sometimes frightening.

    Email and ask for a copy of NHS Endos/private doctors. You may be lucky and have one who is quite near. Mind you I went from London to Birmingham, so it is well worth it if there is someone reliable.

    Best wishes

  • The NHS test misses around 50% of cases :(

  • I'm not a doctor, but you clearly believe the tick bite is relevant. You need to ask for a Lymes test and I understand there are different tests depending on whether your infection is recent or historical. This site seems to have a lot of info

    Treatment for Lymes isn't hard, I think. It involves a course of antibiotics. Something even the most challenged of GPs can manage (apologies for cynical attitude).

    As well as TSH, you need all the other tests that people here suggest - including T3, Vit B12, Vit D, iron, ferritin.

    Then take a look at this adrenal questionnaire, in case there is adrenal involvement too

  • Thanks I have calmbed down now, yes I have had the lyme test, I even phoned the lyme forum who indicated I have lyme and a western bot is not conclusive, I had a rash and went to hospitol as it was painful, was given anthitamines. Then problems began, then diagnosed Autoimmune D thyroidites and gp ignored. I am so unhappy with all this, what options do i have if gp feels no more test ( scans) she has offered to test calcium, liver, thyroid panel. dont think I will get t3 ever, I am concerned both parents had early heart attack and both got osteroprosis, my dad has loads of symptoms of graves, nearly lost his eye site/ Gp not interested, I am sick of blood test, I told her I am going back to see the private endo and she felt I should take my newly blood test with me, when they are done. The neurologist said that its impossible to have lyms as there are no ticks in our country W T ..... poor husband I will be in tears when he comes home, I really dont know what to do. xxxx

  • There are ticks in the UK- carried by deer and other animals. Hotspots like the New Forest.

    I had a bite which wealed up in a red 1cm raised area and lasted weeks. Only antibiotics cleared it.

    Another time a bite [more likely a spider?] brought up my knee hugely- I may still have pics. AntiB's again. These reactions are probably worse in cases of UAT where low Vit D ,B12 and fatigue in general leaves you low.

    Your GP needs a talking to by someone- they are paid well to do more than resist finding solutions and blowing you out. No wonder you get low.

    Have you tried PALS the patient group who intercede in bad going cases?

    If you get really focused it's amazing what the effect can be.

    My last pitch was to offer to send my private testing bill to the Sec'y of State for Health!


  • PALS is a good suggestion, Patient Advice and Liaison Service, you should be able to access them through your nearest hospital, ring reception and ask for the PALS team. Also, there might be an advocacy organisation in your area who can assist you to find the help you need. There is Lymes disease in this country as I know a couple of people who have caught the disease from a tick bite in woods in Hampshire.

    Thyroid problems can sometimes make you feel anxious. Thyroid disease affects a lot of different parts of the body and can be very confusing. You need to understand what is happening to you so that you can get well. Can you find someone that can help you to do that? I went on a course called 'ACT Mindfully' and it was very helpful. Some people call it 'Mindfulness' courses. There might be one in your area?

    There might also be an expert patient programme in your area. They run courses for people with long term conditions and can be very helpful. It's helps to meet other people who are struggling with similar problems and learn new ways to cope with health problems.

  • Are you still taking Levothyroxine? Maybe a different brand would suit you better. I had a lot of neurological problems and they improved greatly when I switched to a different brand of Levothyroxine. Just a thought.

  • no, doctor wont give me anything, even though blood test showing hypothyroid, she suggested more blood test, Thanks hunxx

  • Hi Merrisa reading your blog I totally understand your anger, your story is very simlar to mine.i was eventually diagnosed with an underactive thyroid in 2006 suffering for years being told im depressed and starting to believe it was sent for more blood tests but forgot blood form nurse let me fill in another and I ticked thyroid antibody , and low and behold told I have underactive thyroid although didnt show in that point I was so happy to finally find out what was wrong with me , and stupidly thought once on medication everything would be fine , how stupid was I , my doctor even more so I didnt regain my health but gave up for a few years and was deflated.i moved hose 4 years ago and changed gp, and so it all started again lots of syptoms and still being fobbed off with your depressed, the other problem was seeing a different doctor each time , which does not help .ive had tenderness in left side for at least 4 years told it was slipped rib syndrome then chosticondritis followed swollen muscle , specialist wanted to give me cortizone injection directly In to problem area , but couldnt really tell me what it was and xray showed nothing, I refused and so discharged.I then went on to have kidney stoney which was removed followed by 6 water infections ,vomiting, headaches , exhaustion and problems with my employer , a family member who isvery articulate came with me to see gp and advised me to get copy of my medical records , and Iinformed the gp that we would take the matter further if nothing was done and that seeing a different doctor each time was not good enough.since then they have actually started to listen and I was seeing same doctor until sadly she left last week .I then went on to have pyoderma gangerosum ,chronic urticaria, angiodema, low vitamin D and Calcium joint pain genrally feeling awful and exhausted , But through it all am now under endo am on t3 told by endo I will have to be under them whilst on t3 as gps dont understand it im now taking high dose vit d pre scribed by gp just finished 24 hour urine test for adrenals as I also have heat intolarance, sweating all the time .only been on t3 for about 9 weeks and vit d for 2 so hoping will start to feel improvement should go back to gp but take someone with you and demand they send you to see maybe another endo .again if I hadnt kept going back when I feel so unwell I would not know I had vitd and calcuim deficiencies,It makes my blood boil.good luck you must keep shouting to be heard even though its the last thing you want to do when your ill.


  • Thank you so much tact, it's refreshing to hear a similar story, it's a shambles, gp upset because the endo took on board my symptoms and didn't label me depression. Really sorry to read your post, I really hope you get well,, much love. Xxx

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