I had a total thyroidectomy last october(9months) and have been taking thyroxine ever since. My doctor keeps changing my dose after each blood test, every 6 weeks, in response to it being hi/lo. Each time they only test my tsh. They told me this is the only test needed as i have no thyroid. Is this correct? My latest tsh is 0.53, previous one, 6 weeks ago was 0.4. My current dose is 125mg. Trouble is I'm feeling pretty awful. So exhausted despite having lots of sleep, no energy, appalling memory and concentration. I cant keep going on feeling so tired. Its not easy when i have a 18m to entertain!! Ive been reading about desiccated thyroid. Anyone know anything about this? Also when should i be taking my thyroxine as read 2 hours before breakfast and no other meds at same time? I take meds for acid reflux at same time about 1 hour before i eat. doc told me today to come back in a year!! I think she crazy and have made an appointment to see her next week!! any advice or thoughts are greatly appreciated as i find this whole thing very confusing and frustrating. Thanks!!

11 Replies

  • It is difficult to know unless you can arrange Free T4 and Free T3 blood tests. You may not be converting the Thyroxine well, so that your T3 is low or below range but T4 is high and consequently creates a low TSH result. This may look good to your GP but is not good for you as you will have symptoms of being hypothyroid. If your GP will not test these, could you manage to have them done privately? See Thyroid UK site for details.

    Your GP should check iron, ferritin, B12 folate and Vit D, as these are often low in hypo people and cause various symptoms similar to being under medicated. If you get these tests done post here for members to advise. I do hope you get help soon.

  • Thank you for your reply. Lots of info and good advice to take to the docs next week!

  • Bagpuss, TSH is pituitary output to prompt the thyroid to produce T4, so totally useless in your case. Your GP should, at the very least, test FT4 and preferably FT4 and FT3.

    Thyroidless people don't always do well on Levothyroxine (T4) only and often need the addition of Liothyronine (T3) to feel well as they don't convert sufficient T3. 20% of T3 is produced in the thyroid and the rest is converted from T4 in the liver and other organs.

    If you can't persuade your GP or another GP at your practice to test FT4 and FT3 (labs often refused to test FT3 unless TSH is suppressed unless GPs are very insistent) I would recommend you order a private test from Blue Horizon or Genova via

    If your FT4 &/or FT3 is low you will benefit from T4+T3 combination therapy or natural dessicated pig thyroid (NDT). T3 can be prescribed on the NHS although many GPs won't agree to without a recommendation from an endocroinologist. NDT isn't licensed for UK use so few NHS doctors will prescribe it and most people self-medicate by buying on the internet.

    Levothyroxine is best taken 2 hours away from other meds, you can take it at bedtime (two hours after food & drink and meds).

    Omeprazole and PPIs lower stomach acid which is usually already low in hypothyroid people and makes it difficult to break down proteins and absorb nutrients and lowers B12. Many members take Betaine Pepsin (available OTC) before meals and raw apple cider vinegar (ACV) in orange juice or water with a spoonful of honey before meals to increase stomach acid to break down proteins. Raw ACV with water and 1/4 to 1/2 tsp bicarbonate soda is a good remedy for indigestion and heartburn.

  • Thank you for your reply. Lots of info and good advice to take to the docs next week!

  • Doctors need a course which they should be forced to attend and pass exams before treating people with thyroid gland dysfunctions. They are ruining the healths of their patients.

    This is a quote from Dr Lowe:-

    If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

    The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

    Go to the date January 25, 2002 to read the whole question/ answer.

  • Thank you! I feel like taking all this to my doctor to read!!

  • I have had a TT and my health was totally ruined by a year on T4 only which it has transpired I do not convert. Don't be fobbed off though I know it's hard to make your case heard when you feel so rubbish. I am fortunate to have a good GP who was open to trying anything (including a referral to Dr Skinner) and now a somewhat better endocrinologist than the physician I was seeing before. I discovered that my B12, calcium and vitamin D were bottom of the range and some symptoms have improved hugely since correcting these though my thyroid replacement is still not sorted completely. I found it very useful to keep a diary of symptoms, thyroid replacement dose and blood results and how they correlated, to support my lack of progress. When on Levothyroxine my TSH seemed to jump around all over the place and seemed to bear no relation to my T4 and T3 blood levels. I have been astounded that a person can have a vital piece of equipment removed and then be fobbed off and treated like a time waster when their body doesn't respond to treatment in the way today's tick box medicine seems to expect. Good luck with your appointment and don't give up.

  • Thank you! Yes its hard and I do feel like they look at me and think, you AGAIN!! I have other medical issues that I'm not addressing as worry they will think I'm mad!! I just hope my gp will listen and respond! Not holding out much hope tho! I'm going to go ready with all this info and see what happens!! Aarggghhh!!!!

  • I just say yes it's me again and I am going to keep coming until I am better! You are right about other medical issues though as they seem to latch on to those. Good luck. Let me know how it goes.

  • So I saw my gp yesterday who flatly refused to test my ft3. Here's her reason: the pituitary tells the thyroid to produce t4, I don't have one so they give it to me. I have a pool of t3 and t4 in my body that then sends a message back to the pituitary to say I've got enough. Therefore I must have enough t3 and t4 in my body as my tsh level is within range. If it wasn't within range then my t3 may not be right. I tried to discuss with her how t4 is converted into t3 and maybe I wasn't converting correctly but she just looked at me and drew me a picture to show the above!

    Trouble is I barely understand it all myself and when I'm there she starts babbling I can't think straight. I wrote it all down tho and read bit to her. She asked where I was getting this info from. When I told her she laughed and said well they clearly don't know anything!

    I also told her I had swapped to taking my levo at night to which she also laughed and said its a " wake you up drug" so taking it at night isn't good. She said there is no need to worry about food with it!!

    Funny thing is she also takes this medication so I'm confused as to why she seems to not know as much as I expected!!

    She has agreed to do the other tests recommended to me: iron, ferritin, vit d, b12. If these come back normal I will then push harder for a t3 test!

  • Bagpuss, I had a similar circular argument with my endo last year and a diagram. I told him I understood the HPT axis feedback loop but it didn't address my below range FT3 and was told to keep taking the T4 which suppressed my TSH. I decided to self medicate with T3+T4 combination and 6 months later he agreed to prescribe after seeing the improvement in my health.

    If you can persuade your GP to test FT3 there is every chance the lab will decline to test it if your TSH isn't suppressed. I'd recommend getting the private test and if the result is low ask your GP to prescribe T3. It doesn't sound as if she will be very amenable so you may have to consider self medicating.

    I don't tell my doctors that I get information from thyroid support fora, I cite the research paper/s I glean from them. European or UK research if possible as it gives them less reason to be superior and dismissive.

You may also like...