Dumb doctor strikes again!

So went back to docs today because my meory and confusion is gettiNG lot worse. It's getting to point where I feel like I'm losing my mind. I tried to explain to him that this is all hashi's related and Neurologist even agrees my head and breathing problems are caused by this. Because my last bloods from july were TSH 0.12 AND T4 21 he said it's not thyroid related. I said to him the TSH is worlthless and the most important test is free T3 and his exact words were "that's very debatbable"...WHAT? The ACTIVE hormone that is respomsible for getting into your cells is "debatable"? He said he has a few hashi patients but doesn't effect them that much. He also said i'm focusing too much on hashis....well it's screwing up my life so of course that's going to cause problems.

Tried expllaining to him that this condition is what's causing all my problems especially with college and work but he just wanted to throw anti depressants at me.

Seriously want to put in complain but doubt there is any point because no one would listen.

27 Replies

  • Hypo101, have you tried 100% gluten-free diet? It may help reduce Hashi flares and antibodies. TSH and FT4 are good. It's no guarantee FT3 is good but it looks like the only way you'll find out is if you order a private test.

  • I'm trying to. Thought it would be really easy but actually no that easy.

    Another issues now though is it looks like i've got breasts and now it's i can't wear just a shirt cos people stare. My testosterone is apparenlty "normal" but also having lot issius in that deparment and have a bag of worms/enlarged veins in left testicle.

  • Hello Hypo101,

    Sorry you have had such an awful time..your doctor sounds horrid.

    I have Hashi and take curcurmin which has reduced inflammation in my body and calmed down my immune responses.

    I had got to a point where even perfume and paint made me dizzy but now am able to tolerate both...in small amounts. I can even eat a bit of gluten, although still try not to.

    Have you read Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause by Izabella Wentz? It explains the full impact that Hashimotos can have on our health if left unchecked.

    Hope you feel better soon.


  • I have it on order :)

  • Your TSH kis low which may well indicate Central hypothyroid which is pituarity based as opposed to primary which is all your gp seems to know

    Your free t4 is good but its free t3 that matters and without that we cant help much

  • I've got positive anti bodies so have hashimotos (111) I'm due to have another TSH, FREE T4 AND FREE T3 next week though doubt FREE T3 will be tested.

    Also had MRI on head last week ordered by neurologist becausebof memory loss, confusion and left side keeps feeling funny. Get the results in 4 weeks time.

    ATM i'm on 75 of thyroxine.

  • Hypo101,

    Dr Datis Kharraziac states in his article.............

    The most disturbing thing I see in regards to Hashimoto’s is that although people’s TSH may be managed with thyroid hormones, their immune dysregulation goes unchecked. This leaves other areas of the body vulnerable to attack, the most profound being the brain.

    There are three ways Hashimoto’s can affect the brain. First, many people with Hashimoto’s also have an autoimmune attack against their nervous system. On a blood test this can be identified by positive antibodies to neurological tissue. Second, unrelated to an autoimmune attack against the nervous system, the inflammatory response generated by Hashimoto’s can activate the brain’s immune system, hence promoting inflammation in the brain. Third, Hashimoto’s can lead to low thyroid hormones, which are necessary to dampen the brain inflammation caused by the previous two factors.

    If you read my previous posts from about 4-5 months ago you will see I too have experienced lots of weird head troubles. Hashimotos can do strange things in the body if left unchecked.

    Doctors recognise Hashi in the form of high antibodies but do not recognise it is a progressive disease and that will impact long term health if left unchecked, spreading all over the body.

    The ONLY way to feel better is to reduce antibody count causing all this inflammation.

    - Eliminate the trigger (gluten ?) (or like me - perfume & paint )

    - Reduce inflammation through diet & supplementing

    - Eat a well balanced diet & foods known to quell inflammation

    - Address gut issues such as IBS, candida, etc and nourish with probiotics. Also HCA , bile and digestive enzymes if required.

    You will enjoy the Root Cause book. Another interesting read is "Why Isn't My Brain Working?" By Datis Kharrazian.......it's quite an eye opener..!!

    I hope you feel better soon. It is scary having head problems. I know I've been there too but you can get better if you follow the plans.


  • Thank you!

  • Insist that ? Hypopituarity /central hypothyroid? Is put on form as that means they must test t3

  • Hi. Have you had your B12 tested? Low B12 (even within range) can cause severe neurological problems such as memory loss, confusion and nerve dysfunction. I'd ask for a blood test, and don't be tempted to supplement in the meantime. You could also post your query/results on the Pernicius Anaemia forum here.

    As you already have one autoimmune disorder (Hashi's) it's not unusual to develop another. Best of luck.

  • Yep last test was 320ish. I'm on 1000 sublingual B12 supplement.

  • If you got that level of 320 after you'd been on 1000mcg sublingual B12 for several weeks, then you might want to consider increasing your dose. There is a 5000mcg dose available from some manufacturers. I'm assuming you take methylcobalamin, not any other form?

  • On my first test which was few months ago my B12 was 232 and because it's normal range and doc said it's was normal I did think much of it. I then began researching and started taking B12 supplements couple of months ish ago (i really don't remember my memory is really screwed) and had another B12 test other week showed that it jumped up. Sometimes I forget a dose but also sometimes I will take 3 or 4 tablets a day.

    Yep I take methylcobalamin.

  • Many researchers believe leaky gut and intestinal disease is the ground zero of autoimmune disease and it's possible that you are, therefore, not able to absorb B12. (PA). Serum 12 only measures levels in the blood and not the tissues.

    in any case, what many GPs consider normal B12 results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', by Sally Pacholok and Dr J.J. Stuart - a book I would thoroughly recommend.

    The neurological symptoms (breathlessness, confusion , memory loss, etc) would seem to indicate this is already beginning and supplements will not be enough. Your GP should be guided by these symptoms to treat with injections without delay according to the BNF and UKNEQAS guidelines below until no further improvement, as there is a short window of opportunity before they become irreversible. I hope this extract from the BCSH guidelines will help persuade your GP to begin injections as soon as possible:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    ukneqas-haematinics.org.uk/... :

    b12deficiency.info/b12-writ.... (List of symptoms and an excellent film)

  • THank you! Another issues I have which is recent ish is that my whole upper back keeps going compeletly numb for 30 seconds or so. When I sit on my chair I think my nerve gets compressed which causes whole upper back to go completley numb for a while. Is that cause for concern?

  • Numbness and tingling are neurological symptoms and most people find it starts in the feet but everyone is different and symptoms vary so much but this does sound part of it.

    I can't stress how important to get treatment as soon as possible even if you have to self inject....

  • Thank you! I'll call docs again asap but am concerened that they will think its all in my head and try and section me...

    I know my body and i know what depression is. I'm not depressed! I'm scared and angry!

  • Best wishes for a good outcome Hypo. Many people on the PAS site here self inject successfully if all else fails. In the meantime, it's best to research as much as you can to be able to fight your corner.

  • Thank you very much!If i do have to go self injection route, where can I get it from?

  • It should be - try this:


    I don't self inject myself but lots of helpful info from others on site.

  • Hello Hypo101,

    It is true that many people suffer a B12 deficiency requiring supplementation.

    I suffer neuropathy in my feet (and sometimes my hands). I have a 50 -60% reduction in MTHFR enzyme activity found by genetic testing and apparently it is quite common.

    This should indicate I would have a strong chance of methylation impairment resulting in possible VERY low levels of vitamin B12 and iron.

    However the reality is....I do NOT.

    I am have theraputic phlebotomy for iron OVERLOAD and had a HIGH result from an active B12 blood test which corresponded with serum blood.

    I tell you all this so you proceed with caution. I know when you are desperate any answer becomes a good answer. This might well be your right answer but if it were me, I would confirm with an active B12 blood test. Details in link below



  • Hi there. It may be an idea to post those figures on the Pernicious Anaemia site. You can have neurological damage at a level this low (some countries start treating a deficiency when it's under 500). Mine was 273 and I had terrible problems with pins and needles, burning sensations, confusion, memory loss and lack of coordination. If you're supplementing 1000mcg a day, this level suggests there's something amiss. Perhaps worth a posting, or a phone call with the Pernicious Anaemia Society.

    I wasted a lot of time chasing a thyroid diagnosis, and things improved almost overnight when I was treated for B12 deficiency. Unfortunately some of my neurological symptoms may now be permanent as it was left untreated for so long. I don't want to frighten you, but I do think it's worth closer investigation by someone who knows about these things (GPS, unfortunately, are notoriously badly informed about B12 deficiency.)

  • I will do that asap! Thank you!

  • the use of Aluminium , non stick , foil, cookware along with slow cookers, electric steamers, coffee makers, George forman type fgrills all cause havoc in the body especially gut and brain

    use only stainless steel, enamel, glass or simple ceramic ) not ceramic coated stuff

  • Referring to your B12 supplementing...

    How do you take the methylcobalamin? Do you just swallow the tablets? If you do, try instead to stick the tablet in your mouth either between teeth and cheek, under the tongue, or between teeth and top lip. Don't suck, slurp or chew, just let it dissolve as slowly as possible. It is supposed to help absorption and is a simple experiment to try. I really think your should be buying the 5000mcg tablets as well. I use the Jarrow Formulas ones which work well for me, but some people prefer the Solgar ones.

  • I stick it under my tongue and let it dissolve.

  • Oh good. You could try a bigger dose then, if you felt comfortable about doing that. :)

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