I have also suffered hair loss.My last blood results were TSH 3.36 T4 14.7 T3 4.4 and Vit b12 is 200. I had to beg for the T3 to be done. After more than a year of asking my GP to do a T3, I finally said I would have it done privately. So, here I am! I told him I was horrified that my B12 had been this low many times and I was told it was normal. Now I ask for the levels. He finally agreed to give me 1000mcms of Hydrocobalamine once a week for 5 weeks. Then another blood test. I have Neuropathy, feet and legs numb and painful, plus all the signs of B12 deficiency. I feel like death warmed up. Tomorrow I will make an appointment to see the GP again re the Thyroid results. There was no time during the last visit to address it, and of course my memory being like it is, didn't help. I feel slightly better on 100 mgms of Levo, but I need more help!! Thanks

26 Replies

  • I agree. Increase Levo to 125 mcg. 6 weeks later test again. Including the fT3. You want your fT3 in the 5+ range. I know some people say upper quarter of range but you body may not accept it at that.

    What are you going to be doing about B12 after the shots are done? You have to supplement like Clutter says: sublingual methylcobalamin 1000 mcg at least.

    Is your ferritin, vitamin D and folate okay? Now you've got your GP where you want him where you want him, get your magnesiusm and vitamin A level checked as well. Can be poopy too. Magnesium is essential for proper nerve function.

  • Thank you Gabkad, I think I am on the right track where the GP is concerned. They did do a whole battery of tests and when I phoned up they said results were fine. I will not do that in the future. When I see doctor next I will ask for printouts.

    I now have pre diabetic sugar, high cholesterol and high triglycerides which I know are directly caused by the thyroid. I never had anything like that. I can see it now, it all fits in.

    These doctors know sweet nothing and they should be referring us to specialists in those fields, but they are getting bonuses not to refer. So patients go round and round in circles with GP's who havn't a clue.

    I told the Gp that when the cholesterol etc come down I know I will be on the optimum treatment. In the meantime I am off internet shopping for some Methylcobalamin. Thanks for your help, much appreciated.

  • Hi Jezabel

    I just ring up the surgery and ask them to read out my results. That way if the Doctor rings or I have an appointment to see my Dr. I have had time to check out what should be happening next re dosage. I am know keeping a chart of my results together with the medication taken at the time. I take this with me when I visit the Doctor and feel a willingness on the part of my doctor to take me seriously.

  • With this results you need an increase of levo. Your TSH should be around 1.

    Good for you that you're getting the B12 shots! 5 weeks is short though, it is 10 shots in 10 weeks or 10 shots in 5 weeks. I got them for 10 weeks and they didn't do anything for me. I directly started sublingual B12 1000mcg after the last shot cause I want my B12 high.

    Is your vitamin D checked?

  • Thank you Flower3. What should my T3 be?

    I am going to order Methyl just now as I have wasted enough time. I have enough damage from untreated Thyroid and now B12. I think my Gp is learning along with me. In 2011 the other doctor in the practice, on seeing my high levels of TSH announced that he didn't want to start me on Thyroxin as I would have to take it for life. I told him that I couldn't see how that would be an issue as I was 66 then. So, he sent me off to suffer the consequence of an untreated Hypothyroid,and I have been suffering ever since. I think it is criminal. Previously when they did Vit nD they said results were normal, ie their normal. From now on I will ask for printouts of my results. Thank you for your help.

  • It is criminal. And the worst part is that if we didn't do anything about it we would all still be suffering.

    Do you've got the ranges for T4 and T3? You want both to be in the upper 25%. If you have the ranges you can calculate what the upper 25% is.

    Vitamin D is very important and often low. I would ask your results if it's not been too long ago that you got it tested. You want it to be at least 80 and best around 100.

  • I agree this neglect by the NHS is criminal since it seems to be a policy. I'd rather be robbed of money than my health. I think being tolerant about this situation doesn't appear to be effective although occasionally someone reports some cooperative GPs. There is a list of doctors who may be more receptive, if you ask. Being left to medicate oneself is abusive when you are really ill.

  • Absolutely Heloise. When we are symptomatic, we are profoundly fatiqued and our brains are not the best, so we can't put up a good fight. Several times I went to the rooms ready for action with everything written down, Got out and saw that I forgot to look at my notes. From now on I will write it all down and give it to the doctor to read, the minute I walk in the door!!

  • Totally agree with you.

    Yes ,it is abusive to have to trawl the internet for hours on end and finally buying meds on line.

    It is abusive that doctors are not open to suggestion from THE patient, who has everything invested in this suggestion.

    What could be more important than ones health?

    Why can't they see this?

    Their EGO, that's why!

    I am very cross, to say the least.

  • Jezebel, you certainly have a right to be very angry. There are certain people who seem to love power...even if they have little jobs...... so I attribute this all boils down to power and also, money. If they can have both, even better:)

    The thing is, it's difficult to overcome either under these conditions. You have to either become more powerful or richer!

    But, we patients now have some options, thankfully, so let's wipe the dust off our feet and get busy getting well. I think we can through lots of trial and error and effort but it's for ourselves so it is worth it.

  • With respect to hairless; when I saw the Endo yesterday she said that your Ferritin needs to be over 80 to stop it. what's yours?

  • Way to stick it out! I commend you and your body will thank you! Stay the course and keep us informed!!😄

  • I have complained of hairloss for over 3 years along with a myriad of other symptoms. My ferritin level was 5 for the last 3 years or more and I finally got an iv iron infusion. 4 weeks on, my hair is healthy and not falling out and I feel like a different person! Why does it take them so long to sort stuff out when they know what the problem is?????

  • I am in pretty much the same boat as you. I have been battling with GP surgery for last 5 years trying to get help. GP seemed to think TSH 3.9(range 4.5) is absolutely fine and normal!, but I knew like you that my health has been declining rapidly, especially last 3 years. These Docs seem to be happy throwing any diagnosis at us, i.e. Fybromyalgia, CF, ME, anything and asking you to go home with pain killers, without really listening to you or helping you in the correct way. We all seem to be just wasting our lives waiting for these Docs to help, when in fact I think this site is the best help you can get. I am waiting for Endo appointment on 15th April just so I can get my T3 and T4 tested, as my lab refuses to do for my GP!Useless!

    Good Luck Jezabel, I hope you get sorted soon.

  • Look at this blog Jezabel. I have found this blog so helpful as it it much easier to follow than other great books and even (sorry to say) all the bits and pieces in this health blog. This is because of brain fog, I can hardly concentrate so I've found two things help 1/ finding and filing things that are clearly laid out and 2/ keeping a notebook of things that are very relevant to me. This is also the notebook that I take to the doctors with me for with qs and for As.



  • You need an increase in levo, that's obvious as your TSH is too high. It is helpful if you have the ranges to edit them in (to edit you go down to Recomended go to the left to the down arrow and press that will enable you to edit).

    Some links re hair loss which is very common with hypo.

    This is re low Vit D.

    It's shocking that your B12 is so low but many keep patients 'within range' even at the low end whereas it is best if we are towards the highest range. At least above 600. How many have developed Alzeimers/dementia we will never know. You yourself are suffering with neuropathy which could have been avoided and I hope you recover.

  • Hello Shaws. I got my blood results after increasing Levo to 125 and having 6 B12 injections. I found that they neglected to do the B12 and only did TSH, no T3 or T4. My TSH is 0,8,so I am happy with that. Should I ask my doctor today when I see him, to do a T3 and T$? am still symptomatic. However as I am B12 deficient, perhaps symptoms are overlapping! I really am confused! Thank you.

  • It's horrible to lose hair, as I well know. I don't know if this will help anybody or not, but I have blepharitis and I was told to take flaxseed oil for it. Well, it didn't do a thing for my eyes, but my hair started to grow, which was a pleasant surprise. Even my hairdresser noticed it.

  • Have written that down, that is awesome!! |Thank you

  • I'm not surprised you don't feel good. I Wouldn't feel great with a TSH of 3.36 and your B12 is very low. I don't know what your lab ranges are but my lab ranges are 211- 911 so if yours are similar than you are way too low. You want them to be in the upper end.

    I boosted mine from just over the lower figure using Jarrolds Methylcobalamin 5000mcg sublingual. You can get them online, they are very good.

    You want your Vit D high in the range too and you need to ask if your doc will check your ferritin and folates too.

    Get yourself a little notebook and take it to all of your consultations, have an area of it where you keep all your test results, write down what each test is then have a column for the date, the test result (s) and another one for the lab ranges used.

    If you have the headings ready it only takes a minute to write them down. You can also write down how you are feeling and the questions you want to ask, that way you can just say you have written things down because you know you will forget them. I haven't had a doctor who has objected. Keep it brief though - and just bullet point the main things you don't want to end up reading an essay to them.

    It also shows them that you are taking charge of your condition.

    I've got Graves but when I became a bit hypoT during my treatment my hair fell out and my nails disintegrated, flaked, bent, they were so painful I could barely hold things. Once I got onto a decent amount of my hair and nails went back to normal.

  • Thanks for all your help!

    I am happy for you that you have found a good level of treatment.

    That gives me hope where my hair is concerned.

    I was terrified, as my mother wore a wig until she died last November.

    Her three sisters all had thin hair bordering on baldness.

    They all probably were B12 deficient.

    I wish I knew about it before, so that I could help my mother and give her some quality of life.

    She died age 90, but her diet was very bad, like many old people.

    She had all the signs and symptoms, bless her.

    My Ferritin is 33.

    They didn't do Vit A.

    I am due for a B12 check in 3 weeks after my 5th B12 injection, so I will ask for all the others to be done.

    I would ask for Levo to be increased, but have to wait to see MY GP in 2 weeks, If I phone I have to take whichever doctor is there, and I have no faith in the other two, unfortunately.

    They would never be open to changing my dose, especially seeing that they think those levels are normal.

    Perhaps I will do it myself, just break the 100 tab into 4 pieces

    Thanks once again.

  • Shouldnt you have the test for B12 before the injection?

  • It can be difficult to persuade your GP to increase your levo. When I needed an increase between endo visits, my GP didn't want to do it 'in case I became hyper again!' As if I did, I'd been there already. That was where my little notebook with my list of blood test results came in handy. I was able to point to where I wanted to be and say that I felt better when my TSH was at that level and that I knew I would feel well again when I got a bit more levo and got back to that level. I had it all written in my little notebook :)

    My mother's diet could be awful, she had always been a really good cook yet for some reason she took a liking to sweet things and used to love nothing more than a big bag of pick and mix! Yuk, I do love a bar of chocolate but not pick and mix.

    Could you suggest a trial period of an increase in thyroxine? My doctor grudgingly let me increase on alternate days 100 mcg Monday, Wednesday and Friday and 75mcg for the other four days although I just took 75/100 on alternate days. I always found that it took about a month taking an increase before I noticed any change - in my case the change was that I needed more. Once I got to the 75/100 I was fine then it stopped anyway because my block and replace stopped.

  • what's block and replace?

  • Block and replace is one of the ways they treat Graves Disease (hyperactive thyroid with antibodies). The patient is started on antithyroid drugs - in my case Carbimazole but there is another drug called PTU) once that has blocked thyroid production, the thyroid hormone is replaced with Levothyroxine. The patient is kept like that with regular bloodtests and increases in levo until things are ticking over nicely then all drugs are stopped at once and everyone waits to see what happens next - staying in remission or relapsing.

    Carbimazole can also be titrated down until the patient is just taking a small amount. It depends on which method your hospital / endo prefers to use.

  • Your TSH is too high. According to The British Medical Association "Family Doctor Guide to Thyroid Disorders", the TSH range should be 0.15-3.5. According to the American Endocrinology professional organisation, the range should be 0.3-3.0. and efforts are now being made to reduce the upper limit to 2.5. According to everything I have read, most people become symptom free when their TSH is close to 1.0, or even lower. The FT3 level is a better indication and that should be in the top 25th percentile. Your B12 is also too close to the bottom of the range. You could try sublingual vitamin B12 drops. B12 is notoriously difficult to absorb through the stomach and much easier to absorb when placed under the tongue. Otherwise you could ask for B12 injections.

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