Hashimoto's on no meds

These are my latest results TSH 2.33 (going down). TPO 424. free T4 14.2,

Gp refuses to do T4, TRAb. free t3, reverse T3. Had free T3 privately 3.5, TPO 507 (Oct 2014)

On my report I know my TPO is high!!, On the bottom of the report it says I should have T4, TPO and TRAb !!! Gp refuses to test this. Also should have Vit D , Cortisol and Vit B tested as well as Iron and other tests.

Gp does not realise that there are many thyroid symptoms. Only says can only see me for max of 2 symptoms and only wants to treat them as individual and not put in one box to equal hashimoto's.

Especially Depression,Anxiety. Insomnia, then tired and have to sleep during the day and falling a sleep during day and have no energy or get up and go. Don't have a good sex life as too tired or don't feel anything to why I should need it! Gum problems, goitre, nodules, clicky jaw, grind teeth when I bite causes Tinnitus also nodules growing . Painful neck, shoulders, arms, restricting head movement. AF, Glasses just been changed, sometimes with these can't see some small print. Glaucoma, double vision and painful pressure to my eyes (bp keeps going up to 154/ 58 normally under 120/ 60), Tingling fingers and toes, cold hands, cold feet and lower legs!, Memory problems, Dry skin, Eye lashes falling out, hair dry and falling out, Eyebrows shortening, Oedema fore arm, photo-phobia! Learning problems all my life, have problems understanding something said to me as can't always work out what they have just said an have to get them to repeat this sometimes several times making it very embarrassing. Achy legs/knees, Irregular heavy periods, Stomach pains (thought to be appendicitis) have put my self on a Gluten free diet 8 months ago as couldn't lose the weight I had put on after having my son 14 yrs ago, now lost 21 Ibs as feel better for this as felt bloated. Lower back pain near kidneys!, My spelling is getting worse as can't remember how to spell words as have a mental block, start doing things,then do something else say washing ,then can't remember what i was doing before this. always forgetting things, I have to write everything down and make sure I write it on a calender and daily note pad, having to keep it up to date, swallowing problems, choke and food can get stuck, Father has Hashimoto's as did/does his 4 sister/s. It takes me along time to explain things!

I have been put on antidepressants, tramadol for pain that does not always get rid of all the pain, Dr thinks I am a hypochondriac ,

I saw private Endo and he completely ignored the antibodies and said he couldn't diagnose hashimoto's from the results.

I have had ultra sounds done ok when done in March 2014, when done in July 2014 had grown and had multinodules the person who did the US said I need to have this removed saw ENT specialist said didn't and that I needed medication but my Gp would prescribe, how can they if not doing all the tets and want to treat me like a Hypothyroid patient as all their other patients,as don't do right tests! How do I stand in getting the right tests!!! The nodules have been growing for nearly 6 yrs,

Have had a Ct scan a week ago , Barum swallow 2 weeks ago and bloods done 4 weeks ago, Eye scan a week ago! Not got results for Barum swallow, Bloods or CT yet, not seeing Endo until JUNE, so what do I do as feeling fed up and frustrated.. I can trace symptoms back 48yrs ago as have symptoms all my life now 52!!! I haven't worked for 15 yrs after loosing job , tried to go back, but have trouble with interviews and now filling out forms! It takes me twice as long t learn something. I can;t remember something I would have to learn off by heart as not able to do this! Singing helps to remember songs etc.

I have totally hit a brick wall please can you help me!!!! I have n't lost it yet but soon will as I am having problems manoeuvring car have had 2 knocks one new yrs eve and another one 28th Feb.

I have now turned to prayer as now very desperate! Have to use pell check for many words as have mental block! Difficulty ringing up and making appointments as have to wait for Gp to ring back and then try and sort out over phone and refuse to see me face to face!!! To get meds repeated I just have to ring up no blood tests have been checked for this! and also eye problems are associated with Tramadol. Always told handwriting untidy so handwriting varies from neat to untidy slopping both ways and style different each time I write something down!

Please can you advise me what to do!!!

I can tell you Gp surgery and Dr's treating me if needed! This so they can be told addressed and asked to do write tests!

14 Replies

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  • Oh dear, Carol, you have so many symptoms. I'm sure many of us can relate to them and they are indeed frustrating. I'm not in the UK but I have read enough posts to realize how difficult it is to get treated in your country (if you are in the UK). Maybe someone can guide you as what you can do within the NHS. Many of us have decided to doctor ourselves now that you can buy NDT or T3 from other places. It has to be advised by private message though. The antidepressants are not good for your thyroid. Once you are low thyroid, other problems ensue, especially deficiencies of one kind or another. Usually digestion is off and then you become low in B12, vitamin D, iron, folate and ferritin so, you could supplement B12 and vitamin D even without a deficiency test. Serotonin levels fall and depression can set in and dopamine is also affected and that's why you have those problems. If you do not get a recommendation for a better GP, consider starting your own program. You are not alone. stopthethyroidmadness.com/l...

  • Hi Heloise,

    I am on face book many times looking at resources for Thyroid help including the above. I wanted to get my bloods done first b4 starting any suppliments etc! I do take a lot as you may read in other posts I have replied to my problems!

  • Welcome to our Forum Carol 1962

    Yours is another sorry story of a doctor neglecting their patient. If you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft. In it you will see he recommends treatment for patients who have antibodies.

    Your doctor is so wrong and he is diagnosing you only by your TSH and it looks as if he is waiting till it reaches 10 before treating you.

    He knows little about treating thyroid gland dysfunctions. Is completely unaware of how it affects patients health and you have such a range of clinical symptoms.

    We have to read and learn and it looks from your post that you already know a lot about the condition. This is a list of symptoms - pity doctors are unaware

    He has to check your Vitamin B12, Vit D, iron, ferritin and folate.

    hypothyroidmom.com/92-of-ha...

    thyroidlifestyle.com/

    hypothyroidmom.com/why-a-ts...

    hypothyroidmom.com/5-things...

    The forum cannot communicate with doctors etc. but we can try our best to help you take small steps at a time. You can tell your doctor you have now joined a support group recommended by NHS Choices. Hopefully, it might make him a little sympathetic rather than dictatorial. He may think he knows better than you about your condition, but you are the expert due to all the symptoms you have and he is preventing you improving your health. In the meantime is he causing you more due to his 'head in the sand' way of treating patients. You can show him the following but if he is a stubborn person he might not want to learn through you, his patient, who knows more than anyone how you feel.

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

    hypothyroidmom.com/300-hypo...

    Look forward to your next post to see what your doctor's response is.

    P.S The Pulse article above is by Dr Toft who was President of the British Thyroid Association.

  • Thank you for the information, much of which I have already been following! Done lots of research. Am now waiting for Addenbrooke;s Cambridge to give me results but haven't heard from them yet, although I have another appointment in June, which is 3 months away. Had full bloods done ( I hope) Gp hasn't got back to me or Endo will give me results in June. May ask as i am making an appointment Tuesday/ Wednesday for the same day only way to get an appointment unless for bloods or nurse with on going problem, this then makes me anxious and sometimes can't wait up to 20/30 mins b4 they decide to answer the phone to see if dr going to ring back. Then another 2/3 hrs before the Gp will ring me back! Have sore hands, keep dosing them in Norwegian hand cream and /or Nelsons dermatology cream and/or Calendula cream. Works for a little while until my hands get wet again. I also make sure i rinse my hands after washing up so they don't get any sorer or start getting sore. I will look at the other articles in due course will try b4 going to see my Gp! I will ask if the above bloods can be done!! as well as the TRAb antibodies and T4 as it says on bottom of my results! If they won't then I will let them know that as i cannot get the right treatment for my Hashimoto's I will be looking else where for help!!! This has been going on too long and now fed up being ignored and told that I am wrong! Will take some Thyroid Uk research with me about Hashimoto's results and levels etc to see if this may help them!!! I have to write everything down else I can't remember things and have trouble expressing myself! Most of the Drs at my surgery are women. Will try a male Dr to see if this helps or the Dr I try and see and explain for my Thyroid problem! It got wheels rolling last time so wish me luck!

    The Beta course I am doing at KIngsgate Community Church Peterborough on Sunday evening is helping me get through each day at the moment and meeting with a small amount of friends from the Church once a week also helps! This church has helped me so much over the last 2 yrs, better than any Cof E church i have attended for over 20 yr, or they argue about is who gives the most so they should have a hand in what happens! Not looking at how much other people may earn as they can't give as much as they do and a pensioner also can;t always give as much because they don't have the money to give, but 10% of their pension is a lot less than their large wage packet! They then wonder why the young/youth don't attend church as they are the next generation, but not being encouraged to do so. New Vicar said he would sort this out never did!!! He left after a yr and back to square one again. Too much red tape if you ask me! No I shouldn't criticize any one and don't blame anyone for this! Just now trying to get my life on track which is taking for ever! from Carol

  • Yes, Carol at bad times prayer can give spiritual strength/support when there's no-one else. Unfortunately we human beings are not perfect so we have to not let others sway us. We can only contribute what we can whether it's nothing or a lot.

    What you have to do now is do your best to get better. Unfortunately we do need a sympathetic doctor with regard to prescribing sufficient thyroid hormones to bring our metabolism back to 'normal' more or less and not restrict due to the TSH alone. I hope your next doctor is that person.

  • Thank you will keep you informed!

  • What shocking treatment from your GP! I can believe he hasn't a clue but not to do lab tests suggested by the lab report is well words fail me. I was going to suggest changing to another GP in the practice but is there another near by you could try? Have you any family members near by who are being treated whose surgery you could join? I think even if you paid to have tests done yourself your GP would probably ignore them. I wondered whether it's worth having a word in your local pharmacy, explain its a family thing but your doctor won't do the lab tests suggested and can they recommend somewhere local that treats thyroid patients. They might be helpful off the record but if they can't cooperate you are no worse off.

  • I don't suppose you can go private can you? TUK has a list of private doctors who understand the condition and can really help. L

  • Hi Lisabax, Thank you for your reply BUT I have been private!!! Still no go area!!! That was with a consultant!!!!! spent too much on now back to square one!!!! He was the one that ignored the antibodies!!!! I am strongly considering changing my Gp surgery. I may go sometime this week and see if I can get anymore joy out of old one and then say I am changing my Gp surgery and see what they come up with!!! All the Dr's keep saying you will need medication eventually!!! Not looking at my symptoms, just No's all the time!!! Will ask to speak to the surgery manager and if still no hope then I will be taking my symptoms else where and b4 I change have a word with the Dr's there to make sure that they can cope with my condition and be able to treat it!!!!

    from Carol 1962

  • Carol, forget to ask in my other post if you have contacted The Patients Association? They have no 'ties' to NHS, are a charity that's in patients corner, and helped me when I was fighting to even get a hospital referral. Good luck. Tricia

  • Carol, I can't offer any real advice as I am in much the same boat sadly, just sending a cyber-hug and say the help, advice & support on here is fantastic! I can understand you have taken to prayer in desperation, I meditate, mostly with podcasts to help me get to sleep as I lay there trying to work out how to get some help, but in the end these useless, heartless, arrogant medics need a combined kick up the arris! 🙈🙉🙊 Hugs x Tricia

  • Hi Carol,

    Full sympathy from a fellow Hashi sufferer and certainly a lot of your post sound disturbingly familiar but you are not alone and you are not crazy just ill and desperate. Prayer is good but educating yourself is even better so good you joined the community where there are people who understand and can offer some support with information and advice. Have you also read any of the books on thyroid and Hashimoto's (Izabella Wentz's or dr Peatfield's just to name a couple)? They do offer some practical advice apart from going gluten free and you could also try to find a good experienced kinesiologist or functional practitioner who have dealt with Hashis and can point you in the right direction.

    The most difficult thing for many of us is actually starting to believe that we can make the difference ourselves by our own actions instead of waiting for the medical profession to treat and cure us which mostly they are unable to do anyway. Start with the small steps and do the tests you can do privately yourself (VitD3m iron, folate) and start supplementing accordingly straight away - you might see the difference pretty quickly and once there is positive change you know more is possible. I know you can do it too and you have my best wishes and hugs

    Samaja x

  • Hi Samaja,

    I have started to take supplements B12, vit D, both in patches with other B and D vits etc in, find I have to replace on the day before they say to change else in to much pain to do any thing. Put on Wednesday took off 24 hrs later, but will have to put patch on tomorrow to keep the amount level and not to be in pain. I also take Magnesium 450 mgs = 3 x 150 mgs. Selenium 200 ug, I also take extra Methylcobalamin B12 1000mcg, folic acid 800mgs and B6 2 mgs, sub-lingual. I also have started taking Visionace original with Lutein 4 mgs and other vitamins and minerals in, sent for some Lutein with much higher dose D spray 3000 iu . The only thing I don't take is folate not sure what dose of this or iron to take as don't want to overdose on anything ?. Not sure of other vits and amounts of supplements I ought/need to take? Will look up and see about Kinesiologist or functional practitioner are they private or are they NHS? I do have good days and bad days, but now when I have a bad day I just feel worse than the last time. Am also having counselling (mental health) I know anti depressants aren't good as they can interfere with results as can Tramadol ( now a controlled drug). Hands and fingers sore at the moment have been using Nelsons dermatology cream, plus canendula cream if needed also Norwegian hand cream. The ends of my fingers get sore and red pointed this out but said so did they as though I was lying! One Dr suggested I had a memory test!!!! Also same Dr no idea on symptoms especially gums, shoulders , felt insulted as she got me to take off top but didn't get me stand up or move my head to see where the pain was! Also examined my mouth from about 2 feet away as though she was frightened of something! My dentist ahs been very supportive as has the Boots optician. My dentist discusted with Gp's for over 5 yrs even written them a letter but haven't replyed to her ! So going to see a Gp later this week when I have managed to get through for me to tell them I would like an appointment for a Gp to ring me back sometime 1 - 2 hrs or more later to see if I really need an appointment!! If explain, they sometimes just fob this off! So this is the last time I shall try my Gp surgery if no avail am going to change to one the same distance away as I know other people use this and get better results and treatment from them!!! Thank you for the HUGS I need this at the moment as I do my community church in Peterborough, I am doing a Beta course and helping me I have even been lifted as can feel the holy spirit and talk in tongues . Got more out of last 2 yrs at this church than most other churches I jhave been to also going to have a full immersed Baptism. Also other courses at this church may do a Celebrate Recovery course next to help me!

  • Kinesiologists and functional medicine practitioners are private but good ones are certainly worth the money. They could help with establishing the right dose of supplementation and what supplements you really need. Kinesiology might be especially useful because sometimes when you are taking a supplement or even medication it can pinpoint which brand/formula is really best for your individual system rather than taking something good in general but unfortunately disagreeing with your body.

    When I started supplementation I bought quite a few supplements which were supposed to be good for you and some of them highly recommended as bioviable and easily tolerated/absorbed but found that my body was having different views on them :-) and generally did much better on the supplements my kinesiologist tested as good for me. She is also patiently uncovering step by step what issues there are at a deeper level and what needs addressing first. Given I am entering into menopause as well as dealing with Hashis it is not an easy task but there is slow improvement! If you cannot find a good kinesiologist maybe a herbalist could help as they may be easier to find.

    All the best with your course and spiritual development! Being fulfilled on all levels is important as well and we need to help our body and soul to be in harmony. More hugs x

    Samaja

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