Back to square one

Hi all, i am now back to the begining, after 5 years of trying to get a diagnosis, have now had a tt 6 months ago, now on 125 micro of levo, still have hypo symptoms, told my endo and he said wear an extra jumper and have a nap in the afternoon, i am going to increase my levo myself by 25 micrograms and see how i get on, what is wrong with these doctors dont they want us to get better and feel well, surely if there is medication available we have the right to be treated so we feel well. Will let you know how i get on,

Linda

24 Replies

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  • HIya. Poor you, how horrible to be fobbed off with an extra jumper, as though this is professional medical advice. This kind of attitude is why I am now reluctant to see the gp for anything. I'm tired of being treated like some kind of bovine mouthbreather as though I go crying to the gp because I walk around naked in the winter and wonder why I'm cold.

    Do you know what your last blood test results are? They should tell you if you're undermedicated and it sounds possible as 150mcg doesn't seem a lot if you've had a tt.

    Good luck - I hope your little bump of t4 gives you some kind of result. It may not be enough of a bump but if you don't feel hyper and/or if you feel some relief you will know you're going in the right direction. The good news is that coldness was one of the most easily-relieved symptoms for me on t4 (which didn't help me in many other ways) so hopefully it will help you too.

  • Hi my blood test results were ( normal) and endo said within range, and they are but i still have symptoms and why should i be left to feel like this, i naively believed when i was told that all i would need to take is 1 small tablet a day to replace the thyroxine and all will be well.

  • Tatty10, do you have printouts? They are obliged to give you your actual results, not just send you away with a pat on the head and 'normal'. Just because the results are within range doesn't mean you can't do better. For instance, you may feel awful if tsh is 4 but much better if it is below 1, even though both are within range. T4 and t3 in particular need to be high in the range to give you the best chance of feeling well.

    Don't worry - you'll get there! x

  • I can just imagine how it would go down if I went into work and asked for naptime every afternoon!!! What rubbish! Sorry it was so hopeless x

  • Hi tatty10,the more i read comments like yours,the more i realise what twits these Doctors are. Don't give up, the answer is out there. I have the same probs with my G.P. My brother in-law offered to pay for me to see a dr. friend of his, for a second opinion. This one is convinced i have M.E. Even after me telling him that Dr. Skinner has helped me so much. The mention of that name did it. His reply was "Oh of course Dr Skinner thought everything was thyroid! I asked ,could he explain why my muscle and joint pain and one or two other symptoms had been helped by Levo, he could answer that specifically. But said he was old enough to remember when Levo was given to fat women to give them a lift. He didn't examine me, take my temperature or anything medical. He looked on the internet and found two sites in |London that he recommended for M.E. treatment. I also asked why my temperature was so low (ave 34 C). he still didn't check it and said it was nothing to worry about-the body does funny things when you have M.E. My wife and |I realised on the way home that he had charged quite high fee to tell us two web sites we could have found by our self. Excellent value for money, I think not. I am determined to carry on with Dr. Skinners way of doing things. Even if there is an increased risk of stroke or heart attack, (this i don't believe) if I can get my life back for a few years, it will be worth it. all the best.

  • I have also had a TT and was told the little white pill story like you and it has been far from my experience that it is so simple. since finding this site and the excellent advice people give I have always asked exactly what my results are (numbers, not just in range) and kept a diary of symptoms correlated to results as with a foggy brain it is sometimes hard to argue your case. Puncturedbicycle gives good advice about ranges. Don't be fobbed off with normal or in range.

  • I was told the same lie, that after TT I would take a daily pill and be fine. Do they honestly believe this? It has ruined my health and the life I had before Graves is a nostalgic memory. Now the truth is out and a new endo I have just seen has told me he cannot wave a magic wand and I must put up with my symptoms. No doctor can help me, said my GP last week. Where next?

  • Where next? Far away from the new 'your doomed' endo, I hope.

    I've had TT following the "good cancer" and was told "I might be a bit lethargic" and also sold the daily pill lie.

    Self medicating & trialling according to your symptoms is the only option IMO. I went off all meds for 4 weeks & felt better, even with a TSH of 107.5 Symptoms inc COPD, parasthesia, internal tremors, racing heart, palpitations, diarrhoea, fibro, joint pain etc disappeared. All started again within 7 days of resuming T4. Adding T3 has stopped the symptoms intensifying.

    I'm damned if I'll tolerate symptoms caused by Levothyroxine. Happily, T3 & NDT outwith the NHS are affordable. I just regret trying to become well on T4 only for the longest 2 years of my life.

  • I was under Dr S last year and he allowed me to do whatever felt right, so I had T3 only for 9 months. Although immediately felt better, on higher doses I had lots of unpleasant symptoms re the heart and digestion, so eventually went onto the T4/3 combo, which I am still on. Worst symptom is aching and joint probs. Can barely walk this morning through hip/groin pain. GP says hip is fine and is sending me for physio but I know it is an issue with medication. T 4 seems to be no longer doing anything for me, so I may have to return to T3 only. The saga continues...

  • I prefer T4+T3 combi. Just not sure that generic Levo is the T4 required. Have you tried branded T4 or NDT?

    Knowing that I felt so much better off meds has given me the confidence to try and get well using alternatives.

    I've blood tests for TFT & thyroglobulin this week then I'm going to trial NDT. I had the waste of space NHS health check Mon and I've lost more weight and BMI is only 16. They'll bury me in a drinking straw if I don't get some flesh on these bones soon.

  • Oh! I did not know you were a skeleton like me. My BMI is about the same. The last endo spent half of my appointment probing for admissions of anorexia. Grrr!

    Yes, I have tried Armour but felt worse. Even tried again last week, although I think my tablets might have lost potency, as they are a year old.

    Sadly, being thyroid less I dare not try the no meds route or they really would be burying me (in a drinking straw). I have to have something, even the rubbish on offer.

  • Ha! Can't win with the weight thing. One's either eating too much, or too little. Always the px fault though.

    Well 4 weeks meds free didn't kill off TT me. I felt well initially but was incredibly exhausted and cold in the last few days. While I don't recommend it, I don't regret it on two levels; one being the certain knowledge that levo was making me ill and could, therefore, be fixed, and secondly, I think the break really did work as a detox.

    If Xmas hadn't been looming I might not have resumed meds quite then. That might have been poor judgement due to a starved brain though :-D

  • Clutter, How long is it since your TT and was it for Graves? I am amazed you managed so long without any meds. Did you not get dreadful symptoms? I can hardly walk today with hip/groin problem and am sure it is to do with meds not being right. Am thinking of changing the T4/3 ratio tomorrow, I.e, less T4 more T3. What are you on?

  • I was diagnosed with Hashi in July 2011 & had PT Dec 2011 to remove nodule compressing my windpipe. FNA & core biopsy were inconclusive but histology was positive for stage II Hürthle cell carcinoma.

    Follow up completion Mar 2012 & 3 x 20mcg T3 until RAI ablatement May 2012. Banged onto 200mcg Levo and just got sicker as time went on gaining fibro, joint pain, COPD, internal tremors, devastating palps, weight loss etc.

    I honestly felt better off meds until the last few days. Those symptoms just ceased as the meds cleared my system. I had to put both hands on the bannister rail to get downstairs because the tremors were so bad. They just stopped dead, no tailing off. I gained 2½kg in 2 weeks. I could breath. Last to go was fibro. I hadn't been able to raise my arms to comb my hair & struggled to wash my neck & shoulders, pull on clothes, coats - gone!

    I've been taking 100mcg Actavis T4 since Dec 7th but symptoms were coming back after 4 days so I added 25mcg T3, all taken at night.

    TSH & FT4 are now good (FT4 in top percentile for 1st time) so GP ok'd reducing T4 to 75mcg on Monday. He doesn't know I've been adding T3 & I stopped taking it a couple days prior to TFT end Dec. I hoped threatening to purchase online might force a prescription, but no.

    I haven't taken any T3 since Sunday cos I've more TFTs tomorrow for GP & Fri/Mon for endos & I want to work on T3 from endos. Point of principle, if you need it, it should be prescribed and I'm determined to bely the notion that T4 suits all!

    I manage sans T3 for a couple of days on T4 without too much distress now. I wonder whether it might be due to depleting the T4 that didn't convert when I was overmedicated? More than a couple of days without and the palpitations & carpal tunnel emerge.

    Have you considered a very small proportion of T4 > T3? Or discontinuing T4 altogether for a couple of weeks before reintroducing 25/50mcg?

    My sister had RAI ablatement for Graves Nov 2011 and is doing well on Levo. Undermedicated a bit, but prefers that to the hyper she experienced before.

  • Hi, Thanks for the advice and history. I think from tomorrow I shall reduce T4 and increase T3. Trouble is I too am meant to be having a blood test for TFT in a week or so, although I think I can spin that to be a bit longer. The new useless endo is expecting some via my GP but I doubt if she will bother to hassle me and I do not intend to see him again.

    Unfortunately from doing my own thing under Dr S, I now have to account for doses, especially if I want my GP to continue supplying my T3.

    I do not think I could manage without it for even two days, as I feel sure I am no longer converting T4. Wish I could prove that but I do not know how, do you?

  • As your GP prescribes T3 I would think your TSH is suppressed and FT4 low in range already. Tweaking probably won't affect your TFT.

    Re converting/rT³? Maybe Genova or Blue Horizon? Probably have to do full thyroid panel which might be expensive. I'm not really sure what proving it does for you, unless it satisfies your instinct and prompts GP to up your T3 scrip. I'm not sure NHS believe in non-conversion.

    Alternatively, buy some T3 online to augment your prescription?

    PM if you need a link.

    ps im being hammered with palpitations now :(

  • I don't know much about palpitations but woke in the night when I had just started T3 only, with what I assume was them. It was very frightening, so I hope yours have calmed down by now. What do you do? Sit quietly and wait?

  • You and I are in the very same boat for sure! I'm waiting for endo referral and off levo now for 4 weeks. Half a stone has gone on so easily with half the food intake!!!!! Still under weight and I like you will not go back on levo I've had 12 yrs of this and enough of my life has been in pain too! I know this will be difficult to persuade a doctor to prescribe Ndt but now have no choice!!!! Really hope this works for us or I will have to stop exercise and it is part of my job so will be gutted! It's so complicated isn't it and everyone just says eat more then!!!!!!!!!

  • I am back on Levo + T3 I bought online.

    I can't even get T3 on prescription. CCG has stopped GP practices prescribing it unless there are exceptional circumstances.

    If endonobs agree to prescribe I'll have to get it from the hospital pharmacy & that could be more expensive in travel costs than buying on line.

    I wish you luck with NDT on NHS. Some people have got it, but it's quite rare.

    People are so stupid stating the bleedin' obvious about eating more. Its what you absorbe, not what you eat that's important.

  • And it is doctor's who put you in this position. Reading further down it seems I have had similar problems to you, ruined life, loss of job, income etc. My daughter is incensed, says you worked for the NHS, they messed up your treatment and then gave you the sack for being ill! I too stopped taking Levo and felt very much better initially but was left with nothing for 12 weeks (I put on 2&1/2 stone in 10 weeks!) and became very ill. I also had calcium crashes and was told anybody can make themselves have a stridor and the endo just told me to drink milk and sit in the sun even though my calcium was below range and it was Jan! I am lucky to have a good GP who prescribed me NDT and was happy to refer me to Dr S though I am still a long way from being well and am not prepared to put up with symptoms. It saddens me every time I read how much people are suffering at the hands of the profession that is supposed to help.

  • Linda,

    If you're to feel well, self medicating is the way to go. Keeping a 'symptoms diary' is a good way to keep a record of dose changes and how you feel. You'll have racing heart, palpitations, anxiety, sweating to name a few symptoms if you overmedicate. Post if you need any help adjusting your dose.

    I was very hypo in Nov/Dec but am good in range with TSH & FT4 now. However, the palms of my hands, fingers and forehead are peeling like crazy and obviously relate to how I was a few weeks ago.

  • hi Clutter thanks for the reply, i have already self medicated for the last week or so, prescribed 125 micro, and am now taking 150micro, i know its early days but i just can not go on feeling so cold and tired all the time my hair skin nails are all dry and crispy, i feel cheated by my doctors and really did believe what they said by taking one tablet a day i would be fine, maybe i would if they would give me the correct dose, after 5 years of being ill and not able to get a diagnosis they owe me the right to feel well, and after my tt they cannot deny that i am hypo.regards Linda x

  • That daily pill lie really needs nailing. Its promulgated by people who are treating lab reference ranges not individuals' metabolic responses to treatment.

    Why did you need TT, Linda? I feel a bit rueful that I allowed a healthy lobe to be removed. On the other hand, I tell myself Hashi would have destroyed it & been horrible to live with in the meantime and I would have assumed that any symptoms were a recurrence of cancer.

    My skin's so flaky I've just created a confetti storm in the bathroom :-D

  • Hi I had a very large toxic multi nodular goiter which was compressing my windpipe and growing into my chest cavity so i am pleased that its gone. but now i feel that i am just being left to get on with it, and put up with these symptoms, which are nearly as bad as what i had before the op. there is medication available so just give me it and let me get on with my life, what up with these doctors?

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