Any ideas please. I really am considering self meds as not getting anywhere with drs. If I self med what should I try first?

Bloods from April 12 when neck swelled and I grew an extra head (nodules) TSH 1.5 (0.27-4.2) Free T4 14.2 (11.0-22.0). Partial thyroidectomy Oct 12. Started feeling terrible 1 month later but dr's refused to test bloods until Jan 13. TSH 4.95 (range as before) T4 13.5. Told me I was normal and the 35lb weight gain since Dec and fatigue would go if I exercised more and ate less. I cried for 10 mins in the car. I was told to come back in 6 months. I returned the following month feeling even worse. Very reluctantly retested me. TSH 6.69 T4 11.6 (ranges as before). Even more reluctantly prescribed 50mg levo. Tested again June 13 TSH 4.1 and won't test T4 because I'm normal. Aug TSH 3.25 still feel rubbish. Up to date - March 14 TSH 3.23 and after lots of beggings and a huge list of hypo symptoms a different dr at practice has added 25mg every other day. Next bloods in 3 months. I've been dieting since Dec and hardly lost a lb, the fatigue is terrible and the usual huge list of other hypo symptoms. Dr's insist I'm normal and I have no idea where to turn next. Any idea's thyoid community? Please don't tell me this is now my life :-(

24 Replies

  • Start with any brand of ndt asap. Nhs kept me undermedicated for years with high tsh like yours. Have not looked back since i started self medicating end 2012. do not waste energy trying to convince nhs gps to help u, they could care less and u never get back the years u lost

  • Thanks for the quick reply. As I have no idea of T4 and T3 should I start with uping T4 to 75mg and a little T3 until I feel better or did you add more when you started self meds?

  • I have just started self medicating.I would get Dr Peatfield's book and follow his advice. It is very detailed

  • Thanks for the advice. Added to the shopping list

  • What the hell. 3.23 isn't normal for someone on meds and very symptomatic. This makes me so cross.

  • I've done cross, upset, depressed, hopelessly lost. I waiver somewhere between desperate and stubbornly determined at the mo.

  • Ooh, hang onto that! It's like jet fuel (esp after feeling upset, depressed and lost). :-)

  • I just seem to be raging furious at the moment!

  • Yeah, I get a bit of this too, and I feel very vulnerable all the time. :-(

  • Aawwww, (((PB)))

  • Bless. :-)

  • What an apt soubriquet! I sooo know where you're coming from. where you're wavering is where most of us on here currently are. Keep that and you'll make progress!

    Natural Dessicated Thyroid (porcine or bovine) is the NDT alternative. You can get it easily without a scrip. Ask for PMs if you want those of us who use it to let you know where to get it. But do read up on that before embarking on it so early in your treatment (if you decide to go that way).

    Further down this thread I see sensible advice about changing your stupid GP and upping the dose of Levothyroxine that you're on. How much further you go with the NHS - in my experience - depends on how much of your limited stock of energy you're prepared to devote to educating the NHS. Was the consultant who arranged for removal of part of your thyroid any good? Could you contact him/her again for help and advice? I expect you've been signed off and thrown back to your GP. But if you've got a point of contact for the consultant, I should definitely ask your questions. I suspect that consultant is ENT rather than an Endocrinologist, yes? That's the department that treated my goitre. How much they actually know about aftercare of a thyroid once they've zapped or removed it I am increasingly unsure. However, it may be more than your doctor seems to know! Good luck - and we're always here.

  • The big problem is that your GP doesn't know how to treat you. Your TSH is too high for someone who has a thyroid gland problem. Too high a TSH whilst on too low a medication, means a low metabolism and most probably weight gain never mind all the other clinical symptoms.

    No wonder you want to take charge of your own health. How mad it makes people when they are told 'eat less - exercise more'. Your doctor has a cheek, have no idea what's going on with the patient who, like you, have to search the internet for help/advice.

    The advice I will give you is to change your GP as he knows nothing other than looking at blood test results and giving his opinion on the piece of paper or computer - not listening to you.

    Members who have had a partial thyroidectomy will most probably answer with their advice. I have hypothyroidism. I am sure you are now hypothyroid too and 50mcg is a starting dose. No wonder you cry, you are quite ill and it shouldn't be a case of self-treating but as Bluedaffodil says sometimes we have no option.

    If you can afford a private consultation, email who has a list and someone may be near you. Others will private message you with advice if they have some. I would be tempted to raise your meds to 75mcg and in about six weeks see how you adjust. If you feel better tell your GP to raise your medication. Give him a nice present by emailing and ask for a copy of the Pulse Online article by Dr Toft, wherein he says that:- The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l. You will see your is much higher than that.

  • Thank you so much for your reply. It great to know I'm not actually going mad. Oops, crying again

  • Nope, we're the sane ones here! It's the rest of them ;-)

  • U are under-medicated. Yr FT3 and.FT4 needs to be towards the top of the range. Reading some books such as Stop the Thyroid Madness is v useful.

    I would increase thyroxine by 25mcg every day rather than every other day and then have yr TFT including FT3 as planned. In the meantime u need yr ferritin, vit D and B12 tested. If low, any if these can make u feel rubbish and if low on iron it will be difficult for yr thyroid meds to work optimally. If yr GP continues in the same vane u might consider changing surgeries.

  • I'm new to this forum and I've been self medicating for over a year but stopped and in November 2013 lo and behold, symptoms have all returned and weight coming back on at the rate of a stone a month...having another thyroid test this week which will be 3 months without any thyroxine, depending on the result I will be asking for a referral to an endocrinologist or getting my credit card out again if that is refused by my GP. Absolutely fed up of feeling crap, looking crap and being obese despite sticking to a healthy diet and exercise programme.

  • May be worth while giving the increase a chance first - meanwhile you can take charge of your health by testing vitamins/minerals iron ferritin folate & B12 and vitD is very important too - deficiencies have similar symptoms and need sorting for Levo to work optimally. Some folk find supplementing with glandulars NutriThyroid/NutriAdrenal or similar helps too.

    I had a PT op too, felt awful, GP suggested CFS/ME instead (co-incidence & tosh!) have anti-depressants (grr!) immediate 2 stone weight gain (without eating much as no appetite) TSH above 5 - and no treatment as it's anything but my half a struggling Thyroid! Good luck! J :D

  • I started by decreasing levo and adding in ndt - it was hit and miss as it is not a straight swap. Some people ditch levo and go straight to ndt the next day. It took me about 5 months to get settled on a dose and at one point i felt worse, so be prepared. I would NEVER go back to levo again and NEVER let ignorant nhs gps control my health (life) again. I get my own blood tests down and adjust dose according to results AND symptoms, a concept totally alien to the nhs

  • Where do you buy your NDT? I've started researching but am unsure of a good quality supply. I'm thinking ndt makes more sense than synthetic t4 and t3 but would prefer synthetic if I can (veggie). A good friend lives in Greece and i understand she can buy t3 for me over the chemist counter. Feeling so poo at mo I can't believe I'm contemplating ndt after 34yrs as a veggie

  • You could always try a little t3 first and if you're not satisfied then have a go with ndt. I'm still not settled - six good months with t3+t4 and then five not so good months - but it did make me feel much better than levo alone.

  • Yes, you can buy good quality T3 over the counter in Greece and Cyprus inexpensively. There are good sources of NDT from various places: bless the global village! I don't know about synthetic T4 off scrip. I never went that route. When you're ready for suppliers let us know. Read the Peatfield book first. Or the Toft.

  • I think getting t4 is problematic but op gets some from doc, so along with some t3 that might do.

  • You can buy branded synthetic t4 online too, if you would rather stick to synthetic.

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