Had interesting chat with my GP, she agreed to trial levo if my TSH is still over 3.5

Well its better than nothing. Few weeks ago I was feeling a bit better and my T4 was 14 (10-25), has been 10 for over a year. My TSH had risen a bit from 3.5 to 3.6, but then I started to feel awful again and called my GP. She agreed to trial levo if my TSH is at least 3.5 as the sleepiness came back worse than ever.

She thinks hypothyroidism doesnt come this slowly and she thinks it should have happened already, but she admitted she is quite clueless about how to deal with this as they are so poorly trained. She admitted that, which was surprising.

But to be honest, I had to admit that maybe I have been barking at the wrong tree as well, thinking all my symptoms are caused by one condition. I had chronic yersiniosis for a decade which is proved by blood tests, its a certain type of autoimmune disease caused by a bacteria, that probably is the original trigger of all this.. It was discovered by a psychiatric back then and was referred to endo except, the referral was dismissed as it was written by a psychiatric! I found it out just two years ago. So I do not know what else was going back then as it was never taken seriously.

Though, it is all irrelevant whether i have been developing hypo for years or just past few years, but it just confuses not just me but doctors as I tend to put all my symptoms in one box! I have recently realized how long it takes to address nutritional deficiencies and replace vitamins and how many symptoms have since improved. Takes years.

However, it was nice chat and I respect her, even though she made me promise to admit if I get no help from trialing levo I have to quit it. Of course I agreed!!! What I didnt tell her that if I do not benefit from levo it does not mean I would not benefit from other type of thyroid medication, that I will worry about later. I would not get her to agree try NDT or T3 so no point to argue about it.

I will call lab tomorrow and see how fast I can arrange tests as online I can see next morning appointment available seems to be a month from now.

If my thyroid numbers would have improved dramatically, then I have no idea what I will do as I feel ridiculously awful, I need to drink ton loads of coffee to survive somehow and still I keep falling asleep, I am very constipated and feel very cold. Based on how I feel I doubt my numbers are super good. Never felt this bad even though I say this everytime I hit the bottom. It surprises you can feel worse!!!! :D

Live and learn. Otherwise vitamin D has made wonders, been supplementing for 2 months with K2 and some A and magnesium. Has improved my digestion otherwise, I am still bloated and constipated, but nausea is now very rare!!!! That is a relief.

Blahblahblahblahblah etc meaningless jargon. (that is sarcastic note to myself I just keep rambling and can hardly ever express myself with few words)

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18 Replies

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  • I read your profile and that your negative for TPO antibodies but apparently not everyone with Hashimotos gets high antibodies

    Article here about Hashimotos & gut infections- you may have read it already

    hypothyroidmom.com/hashimot...

  • I have not updated my profile for long time. I actually had borderline TPOAB for months last year. Thing is that I have been gluten and dairy free for years and no idea if I have had antibodies at some point for example when I had yersiniosis. That makes it difficult!

    Tho last year when I had antibodies I had tried introduce dairy back to my diet. Other doctor said it's possible that caused elevation.

  • Remember that the blood test should be as early as possible and fasting (you can drink water).

    Your GP might like some information to expand her knowledge. You should tick off your symptoms on the second link.

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

    thyroiduk.org.uk/tuk/about_...

    You can say you've had advice from the NHS Choices Thyroiduk.org.uk and leave copied links with her to consider,

  • Yup I figured that carefully chosen information she might approve. I don't her to feel cornered but she already thanked me for letting her know there are different forms of vitamins as she has patients not benefitting most commonly used vitamins.

    We have mutual respect now and I do not want to jeopardise it by pushing my luck, but I will definitely print out some information for her.

  • You can say: "thanks for trying to understand how I felt and I'm very grateful as I've been struggling for a long time and things seemed a bit hopeless.

    I have also become a member of NHS Choices Thyroiduk.org.uk.org and I thought you might like a copy of the links I got".

    If you don't want to - do what you feel is best for you. :)

  • She knows I am member of this forum and we have discussed about it. I told her this differs from normal support group as we share proper information and have members like Diogenes. I told her that at first appointment so she would know where I am coming from. She was fine about it , so that part we have sorted out :D

    I have told her I understand she is in difficult place and I am not going to argue about it as it's not her fault how things are.

    Next time I will give her some links/leaflets! I figure she will agree to read them at least.

  • That's a good rapport with a Doctor who is willing to listen to the patient and will give hope to many who are still struggling with their doctors particularly if they don't feel well.

  • No other doctor has ever been interested about the vitamins, like they see if it is in range and thats it, never asked about how I feel bringing the vitamins up, has it any affect at all. This was asked everything, like when I said vitamin D has done so much good otherwise she asked me to tell everything, every symptom I feel has improved. I have explained her how irritated my gut has been before supplementing and how nauseous I have felt and eating has been difficult. So I explained that in the beginning vitamin B12 took away the gnawing feeling and then other vitamins have improved it even more. B12 worked in two days and never had that gnawing feeling since.

    That wise she is not turning me down at all, she believes it all and I admitted its a long process and takes time and one cant expect changes to happen in one day.

  • Good to hear you might be getting somewhere at last Justiina. Hope your Levo is better than ours in UK.

  • I am realistic and won't expect miracles, but if there is any improvement on levo then I know I shouldn't give up on trying different approaches how to fix thyroid. I have only understood two years ago that my thyroid levels are not good so it's relatively new thing for me. I never even imagined I could have thyroid issues!

  • I know how much you have fought to get something done. So pleased for you that this has now happened. Hope your journey to wellness is smooth.

  • Thanks :) like for most of us, it's been a long journey. I so hope it will change for all of us some time soon.

  • I don't know why your doctor assumes hypothyroidism will develop quickly once it starts. Some people have hypothyroidism without positive antibodies or with low numbers of antibodies. Hypothyroidism could be caused by a problem with the pituitary or the hypothalamus, while the thyroid itself is perfectly healthy.

    I was first told my thyroid was borderline underactive in 1990(ish). I wasn't given treatment. 23 years later I was still being told my problem was "subclinical". I only got treatment after begging repeatedly. I did really badly on Levo though, and was not prepared to wait for my doctor to believe I had a serious problem. I think I would have had to wait until hell froze over for that to happen. This is why I now treat myself.

  • As she said they are poorly trained to understand hypothyroidism so I guess she guesses based on what she has been told. So she is just clueless and especially now that endos have intimidated GP'S and warned them NOT to treat hypothyroidism or else...!!! So they have been fed false information. She is relatively young so has probably been practicing on wards that are run by these bad endos.

    I can't just tell her she is wrong and risk it she would turn against me. I will hand over information she can then read and think. I try to be diplomatic as I really feel she could be open minded and would change her mind.

  • She sounds like a good doctor as she has an open mind and listens to the patient. I think that must be quite rare these days on reading many members' posts. Go by your own instinct.

  • We've had very good, compassionate doctors who treated patients as they were taught before the blood tests were introduced and only diagnosed by clinical symptoms and who were hounded by the Associations.

    I know of one who after many years treating patients resigned his Licence as he couldn't stand the strain.

    The other appeared before the GMC many times and it wasn't his patients who complained and he died of a stroke which his patients believe was caused by his treatment and appearing before the GMC. He even invited every Endo to a Conference to discuss the parlous situation of hypothyroid patients and one by one they refused.

    He was a Virologist and about ten years after the introduction of blood tests and levothyroxine was being sent patients who had 'mysterious diseases' which he recognised were actually symptoms of hypo and treated them. Obviously word of mouth got around and he treated many (myself included) and he said the situation was parlous for many people remaining undiagnosed/untreated/undertreated.

  • I agree. A few years ago I was in a very bad place and back then I had no idea that this could be because I am hypo. I remember seeing a young resident doctor and he not only tested my TSH but also T4!!! And he mentioned that he did not like the T4 number, it was too low. Unfortunately, he moved on with his training and the old doc said my symptoms are all in my head.

    In a way she was absolutely right. I'm a good example of why only TSH testing is insufficient, because my hypo is caused by pituitary problems.

    I read somewhere that a head injury may contribute to developing such problems and I wonder if the head injury I received as a pre-teen has something to do with it.

  • I suffered from proper concussion. Was mild, but it really knocked me out and I lost my memory. Was skiing accident.

    It's on my files as I was hospitalised. But no one cares!!!!

    I have read that TSH should be low but some consider mildly elevated possibly secondary if T4 is low. My TSH is 3.6 and I don't know could that be considered secondary as no doctor comments about it!!!

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