Any advise / answers regarding referrals??

Hi All

I am loosing the plot here, I have been advised by the docs I need to be referred to a specialist, I have been given an apt for 22nd December !!

The thing is my docs will not prescribe any medication until I have seen a specialist and all the while I have to suffer. I am drastically loosing my hair I cant function properly at work/home I am not the person I was 8 weeks ago when I first noticed the symptoms.

Anyone been in the same boat with the following blood results and anyone shed any light on why the docs seems to think this warrants further investigation rather than primary care??

Serum free T4 11.4 range 7.00 - 17.00pmol/L

Serum TSH level 5.67 mu/L range 0.40-4.50mu/L

Also my vitamin D level was low 43.1nmol/L range 50.00-250.00nmol/L

I have been taking supplements and also trying to stand in the sunlight for 20 mins a day.

I feel suicidal at the moment and so helpless.

37 Replies

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  • Your doctor is covering himself due to the guidelines laid down by the British Thyroid Associaiton, which are the most restrictive in the whole world, I believe, with regard to the initial diagnosis, i.e. in other countries they'd treat if TSH is over 3. In the UK they state it must be 10. Some doctors will prescribe if the TSH is over range and yours is over range but obviously GP is not willing.

    You may have to source your own levothyroxine. Information is not allowed on the open forum of where to source but some members will Private Message you if they have the information. Starting dose is 50mcg with increases every six weeks of 25mcg.

  • Thanks for the advice I have thought about sourcing Levo myself but Im worried incase this makes me worse (although not sure I can feel much worse than I do)

    Any private messgaes of information are very welcome as I really cant continue like this.

  • Dr Skinner and Dr Peatfield (both trained around the same time) had the identical viewpoint. If symptoms pointed to hypo the person was given a trial of NDT (that's the original and there were no blood tests). Both these doctors were hounded by the 'Authorities' - none of their patients complained but noses were put out of joint because patients got well, despite the guidelines:-

    This is one of the letters Dr Skinner wrote:

    Letter to Editors of Telegraph and Daily Mail sent 04-11-2010

    Dear Editor,

    I write as a medical practitioner who has focused on the problems of hypothyroidism for some fifteen years. I was interested to read your small paragraph on a patient who had been essentially undiagnosed for five to six years. I write to indicate that this is the least of it and in my experience this is one of the most serious shortfalls in modern medical practice.

    I have come across literally thousands of patients who remain undiagnosed or do not receive an adequate level of thyroid replacement based on thyroid chemistry which has never been validated and is predicated on a ‘range’ of values (known as a 95% reference interval) notwithstanding the patient’s earnest solicitations that they do not feel well as would appear to be the case in the patient in your little piece

    The matter has compounded by a recent extraordinary pronouncement by the Royal College of Physician and Family Practitioners who not only endorsed this erroneous view but further suggested that a certain thyroid reading - namely a TSH reading above 10 - is required to be at a given level which is statistically wayward to say the least and not even commensurate with clinical practice.

    Responsible and sensible deputations to Government, Royal Colleges and the General Medical Council have to date fallen on stony water. We have one last resort namely to establish a World Thyroid Register and if this Register contains a reasonable number of people we may be able to change medical opinion or even - dare I suggest - engage in debate with Endocrinologists and Royal Colleges which to date not has been possible and indeed my futile attempt to join the Royal Society of Endocrinology resulted in my being thrown out prior to attending a single meeting; so much for academic interaction.

    I write to advise pro bono publico of the World Thyroid Register and secondly to ask if it might be possible to write a considered and sensible article in your paper on the matter. Previously a journalist who did an exceptionally good job of investigating the issue was finally told that it would not do for the paper to go against the establishment which is an unusual stance for the ‘Fourth Estate’ and bodes ill for the future of our (presently) liberal society.

    I hope you will give my note your sympathetic consideration; please do not hesitate to contact me if I can provide any further information on this serious shortfall in our present level of healthcare.

    Yours sincerely,

  • If you've not had a Private Message put up a new post in case they missed the response you made above.

  • I have managed to order some levo to be delivered tomorrow however after just seeing my doctor who finds my predicament funny I am now not too sure what to do as he said I am not hypo and need to wait to see specialist as may be looking more like hashimoto;s my head is all over the place even more now I have never felt so weak or helpless in my life. I presumed my TSH levels were heading towards hypo however he says not the case and cant diagnose hence the referral. He says the hair loss is something he can not do anything about and basically go on anti-depressants.

  • Please read this and may be worth showing to your GP. You could always write a formal letter of complaint to the Practice Manager stating that the GP has done nothing to help you regain your health. This normally springs them into action.

    british-thyroid-association...

  • I phoned my docs this morning and explained to the receptionist I cant wait until December to get answers I will end up topping myself before then. Her answer was to book me in next Wednesday to see docs !!!!

  • Read that link carefully and worth printing off a copy for GP. Highlight the relevant parts especially on page 5 where it states that the patient should be evaluated for other causes if result is normal.

    How much vit d are you supplementing? Don't suppose you have an FT3 result?

  • I certainly will do thank you. There was no FT3 test done from what I can see on the results just the TSH and free T4 level I am taking Vitabiotics 1000 IU if that helps !!

  • FT3 test is the important one but unfortunately GPs don't realise that and, in any case, labs refuse to do it. You can get it done privately, Medichecks are reasonable.

    Sorry but that's not enough vit D, minimum should be 3,000 or even 5,000 then reducing in the Summer. Do a search on here but basically supplements need to be a reasonable quality, vit D needs to be taken with fatty food and in conjunction with vit K2.

    Please don't rely on your GP, learn as much as you can!

  • Oh don't worry not relying on my GP is a lesson learned very quickly. I have had more answers / found out more info on the internet than my GP has ever explained. Do I need to buy more Vitamin D tablets or can I just increase the dose of the ones I have ??

  • Perhaps increase to 2 daily and if that goes well increase to 3.

    So many of us have been let down by GPs and thank goodness for the internet!

  • We have you are right I have over my 38 years very rarely visited my GP and I am disgusted by the lack of help, empathy and knowledge they have shown over the last few weeks, it seems to be a case of "I'm not too sure so go away someone else can deal with you but not for another 2 months so just suffer" !!

  • Hi claremc78

    Sorry you are feeling frustrated, unfortunately i had to wait until my TSH was around 10 before i got treated (primary care by the way), in fact it was probably months before i actually got put on levothyroxine...sorry..i know thats not what you want to hear BUT I also have had low vitamin D in the past and this can make you feel very rubbish and as i'm sure your research has already shown you some symptoms overlap with low thyroid, im not saying your thyroid is not part of the problem, what i'm saying is that if you maybe upped your dose of D3...i take the same one as you by the way and its okay to take more of the same but with K2 as others have said then this may help you whilst waiting for your appointment with the specialist. Other nutrients to get checked out are ferritin, folate, and B12 which need to be optimal...mine were also out of whack and i need to supplement these also. Hope this helps and hope you start to feel better soon.x

  • Seriously what is wrong with the healthcare how can they just leave patients like this. Are you feeling better now medicated (daft question I know) I really appreciate your comments I will definitely be upping my Vit D intake and I will also try the K2. My ferritin, folate and B12 levels all came back "normal" however at they bottom end of the range so I am also taking Feroglobin Liquid with the folic acid and B12. However if you can suggest anything else I will be more than happy to try. I am also taking Biotin, evening primrose oil and Bee pollen in fact there is not much Im not taking !!

  • That's why there are so many on this forum.

  • Hi Claremc78

    Unfortunately a fair few folk who post on here are the ones who are struggling a bit. I was diagnosed about 6 years ago and totally trusted my GP and thought that popping levothyroxine would sort out all of my problems. I was kept underdosed, by that i mean within range but marginally medicated if you see what i mean. I didnt think to ask for my blood test results i just assumed if they said everything was fine then it was fine...doctor knows best...I knew nothing about good nutrients until i came across this wonderful source of information therefore my nutrients were probably low but in range like yours for a long time and i have read that its important for the nutrients to be optimal in order for levothyroxine to work..so in my case it did not work very well and i have ended up taking some liothyronine (T3) alongside to compensate for poor conversion of T4 to T3. I am still not completely better but a lot better than previously and am still striving to get back to "normal", this is not the case for everyone that they struggle, some folk are lucky in that levo works for them and they hopefully think nothing more of it, hopefully this might be the same for you once you get medicated but i do think the nutrients are important if you can get them optimised in the interim you just dont hear too much about the success stories on here. i think i read that there is something like 15% of people who dont do too well on levo but hopefully this wont be true for you..fingers crossed. I know you have said you research and that is great, this website is where i have learnt from others otherwise i would now be seriously ill and undermedicated.

  • I don't know how long I can carry on. I have lost half of my hair in the last 6-8 weeks I can now see my scalp and it is that thin it is completely see through. I spend all day at work on the internet and have not left the house other than to come to work for the past 3 weeks and no one will seem to help. Its so unfair that we are left in this state.

  • Yes it is unfair Claremc78. Low iron is known to be a contributor of hair loss, you mention you take Ferroglobin with folic acid and B12, i'm presuming this is a 3 in one type of product? Are you able to share your results for your nutrients? I am thinking that you might not be getting enough nutrients from this product if you are low in range...might be okay for a top-up if you are optimal. I have been taking ferrous fumarate which you can buy over the counter in pharmacies, 3 x 210mcg per day along with Vitamin C to aid absoprtion, B12 i have been taking 5000mcg per day sublingually, made by Jarrows ( i ordered this on line) I have not been taking folic acid but i have been taking folate which i ordered on line but i have only recently found out that i was low in range with this little gem. My mum has low thyroid and she was losing her hair so i told her to go get her ferritin tested which came back well under the low end of the reference range so she supplemented religiously, she said its not coming out like it was now she is back to normal but she does still shed some hair but her thyroid medication is not optimal...its a vicious circle isnt it! Dont lose hope Clare, things will get better but they do take time. x

  • Yes nutrients results as follows

    Ferritin 57 ug/L range 11.00 - 307.00 ug/L

    Folate 3.3 ug/L range 3.00 - 19.90 ug/L

    Vit D level 43.1 nmol/L range 50.00 - 250 nmol/L

    Vitamin B12 150 ng/L range 145.00 - 910.00 ng/L

    Serum oestradiol level 103 pmo/L range 170-500 pmol/L

    I wouldn't be too bad if the doc had started me on meds at least this would be a step forward but she has told me she wont until I see a specialist.

    I have lost all hope at the min but thanks for your encouraging words they really do help X

  • Hi Clare

    Well...your ferritin is actually better than my results after i'd been supplementing but it could still be better. What has your doctor said about your B12 levels? They are on the floor and so probably are you!! Your oestradiol is low isnt it? Dont lose hope Clare its just that you have lots of things going on like i do, some days i think i'm wasting my time and i have felt rubbish for a long time and then other days i think...right...the sun is shining..i'm walking, im talking...get on with it...but its easier said than done. I think one of the problems i had was trying to deal with everything at the same time and expecting too much too soon. Im familiar with the word patience but i dont abide by it too well!x

  • Doctor said my B12 was in range so was fine. Do you think I need to supplement this then ??

    I was advised to have my mirena coil removed as this could be the cause of the low oestrogen which I did immediately as I am willing to try anything and everything !!

    Im the same some days are not too bad others (like today) I sit here feeling like I would rather be dead

    I am looking at ordering levo online as I don't know what else to do.

  • Clare, low oestradiol can cause hair thinning, is your doc investigating this?

  • Nope just told me to have my mirena coil removed no further investigations waste of space.

  • It is now recommended that our B12 be around the 1,000 to prevent neurological damage. You can supplement with methylcobalamin G12 sublingual tablets if you wish.

    Research has shown that B12 is important to avoid neurological damage and that it can be helpful to avoid alzeimers.

  • Claremc78

    Yes, i definitely think your doc should be investigating your low B12 it is only just in range, perhaps it might be time to see a different doctor too, sounds like this one is happy to keep you unwell.

    There is a pernicious anaemia forum on healthunlocked which i think you should join and post your results and ask for some advice. Personally i think you should be on injections, certainly the B12 wont be enough in the supplement you are currently taking. You must feel very low right now? I dont know what to say about your estradiol...i have low progesterone and nothing gets done about that but i did used to have the mirena coil too but had mine removed about 5 years ago. I have read that low B12 can affect fertility so it could be connected...but i'm no expert.

  • I sometimes wonder if the mirena was the start of my problems as it all seems to coincide time wise. I am back at the docs next Wednesday so I am going to mention the B12 to them. I also want further blood tests to see if my oestradiol level has increased. I need some answers !!

    Many thanks for your kind advise it is so appreciated X

  • Thats why i had mine taken out! The first one i had was fine, but the second one just wasnt right...i cant explain why but i just didnt feel right so i had it removed in order to try and balance myself out..and during this time i had my first thyroid blood test which showed i was underactive so it must have been 6 years ago and not 5 when i had it removed. I didnt have any periods with the coil and it was a good thing at the time as they were very heavy before the coil but post coil they are very light if non existent and certainly have never been what they were before the coil. It is my opinion that this coil messed up my hormones! Im glad you are going to persist with your GP (or a different one) i have had to fight for what i want/need, i know you shouldnt have to but you will have to insist i'm sure. If it helps write down what you want to discuss as i often think i know what im going to say until i get it there and then it all goes to pot. Please do let me know how you get on. Glad you have a plan of action x

  • That is exactly same as me I had my first mirena in 2011 then had it changed in June this year. Was fine for the first 4-6 weeks then I just started to feel really off and noticed my hair falling out. This is what took me to the docs and low and behold thyroid problems. It seems we are not alone on this either many women have reported the same issue. I had it removed a week ago today so fingers crossed this will help my oestrogen levels. I will defo be writing everything down and taking in evidence and info I have printed off.

    I will defo let you know how I get on and thanks again. X

  • Yes, i have done a little reading on this some time ago and got the impression i was not alone either...doctors will never admit it though! I think all in all i had this coil for best part of 10 years.

    Good luck Clare, chin up...catch up next week hopefully when you've been to the doctors.x

  • Ok so just back from the docs and what a traumatic experience that was I have just been laughed at by the doc for getting upset over my hair loss and told I seriously need to consider anti depressants. He has advised he will try to "expedite" my referral but will not diagnose or treat as my thyroid level0s/all other bloods are all OK apart from my vit D which he claimed is not that bad !! My thyroid peroxides antibody levels are 76 and he seems to think I may have hashimotos or auto immune disease caused by a virus but cannot do anything which is why I need to see a specialist. He basically said I need to get over myself and stop getting upset.

    Just have to sit and wait and hope I don't go fully bald in the process

  • If you have thyroid antibodies you have an Autoimmune Thyroid Disease called Hashimoto's. Therefore, email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's Pulse online article (he was a President of the British Thyroid Association) and he recommends prescribing if the person has antibodies. I think it's question 6. Highlight and your GP will probably take no notice of this. It is nothing short of disgraceful that we have these problems and suffering along with it to.

  • I totally agree he couldn't understand how I could get so upset over loosing my hair and having to wait upto 18 weeks to get answers / diagnosis. His answer was to try and prescribe anti-depressants but I really don't want to be on these am trying to keep my system as clear as possible.

    I have sent the emai to Louisel and ordered the B12 and have made the decision to start the levo tomorrow as I'm sure I cant feel any wose than I do right now.

    Many thanks for replying it really does help having support.

  • Easier said than done I know but don't let this GP upset you. Many of us have been told we're depressed, GPs receive payments for 'managing' conditions and it just so happens that prescribing anti depressants attracts the highest payment. Google QoF points or check out the Dept of Health website.

  • That's disgusting Ia not depressed just very upset that I am losing hair and no one seems to be able to give me an answer other than wait for your appt. I understand there are a lot of people worse off with terrible life threatening conditions and I feel guilty for getting so worked up but this is not just affecting me but my whole family i can't function properly at the minute and he has the cheek to laugh at me. Makes my blood boil.

  • We understand Clare. I've made formal complaints against a number of GPs who failed to diagnose me. It gave me great satisfaction in humiliating them once I'd been diagnosed by an NHS Endo. Many of us on here have lost marriages, homes, family and friends due to NHS doctors not doing their job. They're well protected by the regulator who, in my experience, hasn't changed their ways since they failed relatives of Harold Shipman's victims.

    If you make a formal complaint against a GP then it will be bought up at their five year revalidation. I've reported GPs to the Care Quality Commission and to the Health Service Ombudsman. All a waste of time.

    Have you tried using hair loss products? I've found that Nioxin worked for me although it took 6 months to notice less shedding. Now using Re-grow and it worked quickly:

    watermanshair.com/

  • Well my mum came with Me yesterday and she works as a doctors receptionis so she is putting a complaint in for me as even she was disgusted with the way I was treated. I am using the Nioxin Hun on my fourth week . I will defo try the other tho am willing to try anything. I just don't see how much help it can provide though if the shedding is coming from within!! Thanks for your support again means a lot x

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