despair on Endo's comments

Hi everyone, just ranting really. It is either that or cry. I had a blood test on Tuesday because of my ongoing issues of tiredness, unable to exercise due to being out of breath in 5 mins, brain fog, constipation etc.....Taking 75 T4 and 20T3 - results as below

TSH: 0.01 - its has always been between 0.01 and 0.03

FT4: 10 (9-21)

FT3: 3.9 (3.6 - 6.5)

I have to keep my dose exactly as it is as any less or anymore could (apparently) be very dangerous for me. His secretary askd him...but what about this lady's' tiredness and excerise problems etc. he said "tell her to rest when she can" Can I swear on this forum???? what a stupid, ignorant ****** comment.

I had also asked him if I could have B12 injections as my result is at bottom of the range and he said no, I didn't need them.

so it looks like I have had it then...... :(

22 Replies

  • Oh dear! I can understand your frustration! Ignorant so-and-so!

    Your FT4 and 3 are far too low. Right at the bottom of the range. So it's no Wonder you feel ill. I suppose he is one of those that just go by the TSH. That is really ignorant!

    So, you have two choices : change your doctor or self-treat. You can start by self-treating your B12 with sub-lingual methylcobalamin tablets - you can get them on Amazon. Your B12 needs to be at least 600, but I would say more like 800. You can also get liquid B12 on Amazon to inject, but I haven't tried that yet, so can't say anything about it. Getting your B12 optimized would help quite a bit.

    Have you also had your iron, ferritin, folate and iron tested? They are important, too.

    And forget about exercising! With a FT3 like that, you're just going to make yourself ill by exercising. Just walk as much as you can without over-stretching yourself.

    Hugs, Grey

  • Hi Grey

    Thanks for your feedback. Below are the missing results which I know are low also. I have tried iron supplementation but even with Vit C it just makes my constipation worse. How do I go about finding out whether an Endo gets hung up on TSH or not?

    ferritin: 34.3 (5-148)

    Folate: 5.6 (4.6-18.7)

    Exercise....? I know I am my own worst enemy but my couple of sessions of tennis a week are what keep me sane quite frankly. I am a single mum mostly as my husband works away from home and I have a full time job and I know I have a lot to be grateful for.......but to give up my tennis would destroy me....sounds dramatic I know but I love it so much.

    also...I was wondering about Thyro-gold. Maybe it wouldnt be wise to introduce that along with T4 and T3.


  • Yup, low all around. You need to supplement. It even looks as though you don't absorb the thyroid meds either.

    Have you tried going gluten free?

    I have found that eating 2 cups of cooked vegetables and at least 4 cups of mixed variety of raw vegetables salad everyday prevents constipation. Even with good thyroid levels, if I don't do this I run into problems. Plus I'm gluten free because eating wheat gives me bloat, slows down the guts and creates concrete.

  • Hi Gabkad. Yes I have been GF for a year now, since my thyroid packed up and I eat a really good diet with lots of vegetables. I have always had constipation problems but it just became impossible once I became hypothyroid. I take 2 ex-lax tablets every day, my consultant knows this, and I if I miss a dose or reduce to 1 tablet, i get a lot of pain etc.

    It just seems impossible to beat when our consultants only care about TSH. :(

  • Have you had a colonoscopy? Pain is not normal. You may have some diverticula.

    Have you tried lactulose? It's better to use something like this than ex-lax. Even magnesium oxide is better. The body gets addicted to stuff like ex-lax and then, yes, the colon muscles don't do their thing.

    I've been experimenting with different things to find out what the colon needs to function well. 1 cup of cooked oat groats (not steelcut or flakes) makes for great bowel movements. So does 2 to 3 cups of cooked cabbage (sauteed with onion, carraway seeds, bacon bits and a bit of vinegar to sour it up). I'm still experimenting but this week was cabbage week. Huge salads work but not as nicely. So I've been doing both some days and some days just salad. I had constipation problems since childhood. I need to be very sensible or the (ahem) hemmorhoid bleeds and gets sore. Big salads make me need to go more than once per day and my 'problem' does not appreciate the traffic.

  • I have sent you a message Gabkad :)

  • Well, at least he didn't tell you to reduce your meds based on TSH. These idiots haven't worked outside the public sector for a long time and probably haven't been ill (or took speed to keep going in their houseman year). *sigh*

  • yes that is a positive Angel....I have to actually see him on March 5th, today was just a call from his secretary. I hope I have enough restraint not to explore with him or he probably will just reduce my meds out of spite.

  • Do you mean 'explode' with him or explore?

  • oops, I meant explode! I am typing so fast because I am upset! :) would it be worth me looking into thryro gold maybe? I will have to wait until he signs me off I guess otherwise I will send him over the edge with my TSH result....

  • Queridalady, ThyroGold contains hormone so will also reduce your TSH. If you are thinking of doing that you may just as well self-medicate with extra T3. If you increase your T3 to 30mcg and feel your symptoms improve you'll know it was because you were undermedicated and can discuss it with your endo at your next consultation.

    My TSH has to be suppressed <0.1 but has varied between undetectable and 0.01 for over 2 years. My endo has never suggested it is dangerous. His only concern is that FT3 should remain within range.

  • I need to see your endo Clutter! Does he take private patients maybe?

  • Queridalady, he does but wasn't very helpful when I most needed it and was struggling on T4. It wasn't until I self medicated and improved that he prescribed T3. I suspect his expertise is diabetes rather than thyroid. PM me if you want his details.

  • I think it's fine to try Thyro Gold that's why Dr Lowe invented it as it doesn't require a prescription. It appears that the people who have tried it are satisfied. I wouldn't bother waiting till he signs you off as you could add a tiny bit to your meds until you are signed off as a success. Then you can write and tell him that thanks to 'thyro gold' I have recovered my health. (hopefully :) )

  • Well,querilalady, it looks as if he will have to do without you as he is doing you a dis-service. Why do they keep patients ill instead of treating the patient with an optimum of meds, they take more notice of the blood tests than listen to the patient and taking notice of your clinical symptoms.

    He talks complete rubbish about the danger of taking thyroid hormones. It may be dangerous for him if he has a healthy thyroid gland, but if we have a dysfunctional one we have to have an optimum as you already know full well. We are in more danger by being undertreated because if we are 'overtreated' we would reduce our dose ourselves as the symptoms of being overstimulated will be so unpleasant we would know instinctively to reduce.

    It looks like it will have to be another 'DIY'. do it yourself learning and diagnosing.

    You will have to supplement with methylcobalamin sublingual B12. I think Amazon is the cheapest. I think he certainly needs to supplement himself as it doesn't appear as if his brain is working adequately. :)

  • Sublingual B12 has been proved to be effective as injections, so maybe you could look into that as an option for the B12, although it shouldn't be left to you to do this.

    As for the endo, he should be looking into why your T4 and T3 are so low in the range especially with a TSH of 0.01.

    When you have your blood tests, do you take your meds before having the blood drawn? Have the tests as early in the morning as possible and don't take your thyroxine on the morning of your test.

    With the T3, you would expect your T4 and TSH to be lowish, but your T3 is extremely low with 20mcg of liothyronine a day.

  • Hi Muffy, I didn't take my meds before my blood test and I always have the blood taken before work at 8.30 am. I was referred to the endo at my request as when I was on T4 only 100 mcu, my T4 was 17 but my T3 was below range at 3.2 (3.6-6.5) My endo gave me T3 but said that conversion issues are a nonsense and that I haven't converted any more T4 to T3 then it is because my body doesnt need it!!!!!

  • Amazing what answers are given!

  • .....and meant to add that your T3 levels have started to go up with the addition of T3 to your medication, so that does seem an odd thing to say.

  • I swear they make it up as they go along!

    You could go with thyro gold, or the Nutri thyroid extract or any one of the NDT products that are available from abroad via the magic of the internet. You just need more T3 in your system, I would guess.

    As for B12, its worth going onto the PA society board here on HU. Lots of good information on how to self-supplement.

    Definitely look at your ferritin and folate too - too low and you won't be able to make good use of what you have. And there is some suggestion that Vitamin C taken at the same time as T4 helps with conversion. I am sure you are already wise to the fact you need to take your thyroid meds away from food!

  • Hi queridalady,

    Your thyroid levels and symptoms are very similar to mine when I was undermedicated. Then I had a DOI2 gene test done and found I had a faulty gene, which prevents sufficient T3 to be produced in specific tissues, as well as conversion from T4 to T3 . With this report, proving that I could not produce sufficient T3 in my system, I was able to get T3 prescribed on the NHS recently. But in the meantime I was seeing a private doctor who had already increased my T3 dosage from 20 mcg to 30 mcg and that really helped with the constipation, which I have had for over 40 years with daily laxative use. I have also been taking a high dose of probiotics for the last 2 years, and still do. That also helped a lot. I don't take laxatives any longer, which is like a miracle.

    So, I would suggest that you perhaps get a DOI2 gene test done and if your results show that you have a faulty gene that should convince your endo to increase your dosage. I think there is information on this site on how to go about getting the test done.

  • sorry it should read DIO2 gene test, not DO12!

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