New here, advice please!

Hi all, just wondered if anyone might be able to help please? I went to the doctor recently after being urged to by my husband who feels really concerned about my health. He states that he has witnessed a real decline in my wellbeing following the birth of our son three years ago. I am a 36 year old woman who lives an active and healthy life but I feel miserable and tired almost all of the time. I have little general drive and really just want to be alone. I feel foggy headed and confused and my memory is shocking. I am tired when I wake up in the morning and crave sleep constantly through the day. I have no sex drive and sleep poorly, waking in the night and unable to go back to sleep. I gain weight easily and have to do 2-3 hours of exercise a day to maintain a healthy weight. I am always cold with extremely cold feet and hands. My hair is thining rapidly and one of my eyebrows has thined at the outer edge. I have brittle nails that crack and flake off. I catch every cold and flu my son has and almost always develop dreadful sinus infections. My moods are very low and I can be incredibly angry especially on the lead up to my period. I am hugely anxious and really struggle to relax. I have a hissing in my ears a lot of the time and pain in my hands. My husband and my son are really suffering as a result of all of these symptoms as I find I am just about able go through the motions but my heart isnt really in it. As a mother I feel it's hugely important to feel a sense of energy and vitality in life and I just don't. It is having a massive impact on my self esteem as I just feel like a bad person for not being able to enjoy my good life with my beautiful family. I was putting all of these things down to other things like, well I 'm tired because I have a three year old, I'm cold because my grandma always was, my hair is falling out because it does after pregnancy, I'm uhappy because maybe I am not grateful enough and so on!!!! This may actually be the truth but my husband thinks it might be something physical and hormonal as I have changed a lot. So....

I went to the Gp and managed to get my TSH tested on 21.09.15 with a result of 0.87. Dr said this is normal but I really stood my ground and protested that I felt with all the aforementioned symptoms further tests might be helpful. I knew there were more that could be done after my husband did a little research. These were done on 29.09.15 and the results were TSH 1.28, FT4 14.5 and FT3 3.9. The doctor said that these are all normal and that an endocrinologist is not necessary. The FT3 was right on the bottom of the range wasnt it? She said that didnt matter as they don't treat FT3. Not sure wat this means. She is waiting for prolactin results and will see me next week with a view to talking about depression and mood problems. I feel upset because I don't feel depressed, I feel unwell. I am considering paying for a specialist but they prefer a referral from your Gp and cost an absolute fortune! What are peoples experiences please? What do you think about my symptoms and results? Am I barking up the wrong tree? I did have a low blood sugar result recently which the Dr also said was irrelivant as it was 2.4 and only just below normal. Should I look into this further? I know you are not doctors but would really just appreciate some support/feedback as my experience with the Gp has been somewhat unpleasant. I just get the impression she thinks I am wasting her time. Any advice would be really appreciated.

Many thanks in advance,

Laura

15 Replies

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  • What it means is, your doctor knows nothing about thyroid. That T3 looks rediculously low, and would be causing your symptoms. But it would help if you could give the ranges, because they vary from lab to lab, and it's difficult to say for certain without them.

    But what it means is, your doctor - despite having done the tests - is still only looking at the TSH - which is 'normal' - whatever that is! The NHS doesn't like treating until the TSH is over-range, despite the other levels. I think you will have to suggest to her that you may have central - or secondary - hypothyroidism, where the fault is with the pituitary, rather than the thyroid itself. Results are the same, though. Did you have the tests early in the morning, and fasting? TSH lowers during the day, and eating lowers it, too.

    As to her remark about the T3... it means she doesn't know what she's talking about! lol She probably meant they Don't give T3 as a treatment - which the NHS doesn't very often. And you'd probably have to see an endo for that. They treat with Levo, usually, which is T4. The T4 is supposed to convert to T3, but it doesn't always. But Levo is a good starting point if you can get it.

    However, the low T3 should give her an idea as to how hypo you are, but she obviously doen't know that. Don't let her 'diagnose' you with depression, and give you antidepressants. Not only could these make you worse, but the 'diagnosis' will stay on your records and it will be difficult to get taken seriously again. Stick to your guns : any feelings of depression are due to you feeling so ill, and her not taking you seriously! And Don't accept a 'diagnosis' of Fibromyalgia or CFS - same rule applies.

    Insist she test your antibodies : TPOab and TgAB - both, not just one! And also ask for vit D, vit B12, folate, iron and ferritin. These could very well be low, and making you feel bad.

    I can't advise you about private endos, but I'm sure someone will come along who can. :)

    Take care.

  • My TSH is always high and sometimes as bad as 12! They always want me to take more levothyroxine am on 112 mgs at the moment and want me up to 125 which I'm refusing as I'm skin and bone as a result of this medication!! All they ever look at is the figures on the reference range and mainly at the TSH only!! I have been battling this for the past 3 years and haven't got even a tiny bit further!! In my experience many specialists don't even look up from their computer to even look at the person sitting there! We are all so very different and one TSH doesn't fit all! I wish you luck finding a endocrinologist who will look holistically at you, there must be some out there!!!

  • Tweed, it's not the 'medication' making you lose weight, it's your disease. And if your TSH is 12, then you definately need something! Have you thought about buying NDT and trying that?

    I do agree with you about endos, they know very little about thyroid, and care even less.

  • I did reply to this but it's somehow gone don't know what happened? Waiting for endocrinologist don't want to be on my own with NDT as they have said it's not suitable for me! Hopefully after the 15 years of weight loss they will give me an explanation instead of having to guess??? Thanks again for your reply grey goose!

  • How would they know it's not suitable for you if you haven't even tried it? No-one can know in advance what's suitable and what isn't. That just sounds like an excuse to put you off trying it.

    I'll tell you how I often lose my replies - I click on Cancel instead of Submit reply! lol

  • Ha ha yes probably that's so easy to do!!! They basically said that it is harder to stabilise the dose as it isn't as constant as levothyroxine! she absolutely wouldn't talk about it and stopped the conversation right away! I would love to try it but when I did try online to the reputable pharmacies they needed a prescription and wouldn't prescribe even with a letter from the gp saying I was diagnosed with hashimotos '! I've been round and round in circles for so long not knowing who to speak to! The gps can't help now as I'm under the specialist and she just ignores the weight loss and looks at the blood test results! My TSH is all over the place at the moment 3.8 and I feel hyperthyroid and burning calories like a teenager lol! But at 52 I don't want to be under weight!!!! It's all so weird this condition that is so trivialised!!!!

  • Yes, it is weird! But your doctor is talking a load of cod's about NDT. It is no more difficult to stablise the dose than it is on Levo. And she stopped the conversation because she knew she didn't know what she was talking about. She had no arguement!

    However, if you have Hashi's, there is a slight chance it won't suit you. But you have to try it to know. And the Hashi's is why your TSH is all over the place - 3.8 is much too high. You need your TSH suppressed when you have Hashi's. That way it's stable!

    If you really want to try NDT, post another question asking people where you can get it without a prescription - it is possible - but replies by PM only. :)

  • Thanks so much for that. Yes I agree she's totally out of her depth with it!! I'm definitely going to look into it but I'm really scared of taking this on my own incase I go even more hyper!!! Thanks again I really appreciate the support!! 😃

  • Thanks so much for your reply. It was really helpful. Nice to have someone say that there might be something going on besides low mood. To answer your questions:

    Full results:

    1st TSH 0.87 with range 0.27-4.20

    2nd TSH 1.28 with the range above.

    T4 14.5 with range 12-22

    T3 3.9 with range 3.9-6.7

    The tests were all done after being up a few hours and I had eaten a big breakfast. I am definitely going to ask for more tests.

    Thanks again!

  • OK, so next time you go for a blood test, make it a fasting test - nothing but water - and as near to 8.0 am as possible. Your TSH would probably have been higher if it had been earlier and you hadn't eaten.

    So, your FT4 is much too low, and your FT3 is way too low. You should suggest your doctor send you to an endo to investigate your pituitary, because it's just not producing enough TSH.

  • Oh my goodness I could have written the first part of this myself!!! I'm 35 with a 5 ur old daughter and 13 month old baby boy!! The rest is pretty similar

    Not sure how long my marriage can stick this!!

    You will get good advice here Laura xx

  • Oh I'm sorry! It's dreadful isn't it. My husband is really struggling. I am just so unhappy and really struggling with my doctor. I hope you get some help too! xxx

  • Nutrition is also really important. When we are pregnant the baby takes what it wants and can leave the mum deficient, which can be part of the cause of post natal depression and PMS problems. I've been there too and sorting out my nutritional deficiencies made a tremendous difference; even my sceptical husband was grateful for the improvement.

    Unfortunately doctors are not trained in nutrition, they just think a balanced diet should be enough, but that's not always the case.

    Can you find a nutritional therapist? You can look up ones near you on the BANT website which is bant.org.uk/

    Keep fighting. Best wishes.

  • Hi Anthea, thanks for that. I do eat a good diet but I am positive you are right and am on the look out for a nutritional therapist. I am so desperate to find out what is wrong with me!!!!

  • Just noticed that the BANT website doesn't seem to come up as a link, but you should be able to type it into your browser or google for BANT nutrition. Their home page has an option to 'Find a Nutritional Therapist'.

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