me again 😔 Really sorry to drive you all mad. Having one last go with GP before I go private. Seeing a different GP. Advice please X

[Jaylou82]

So far haven't got anywhere. Still feel like crap. Being treated for B12 def which will wait till Jan for more bloods to see what they are before dosage is changed. However still using lots of hasmo symptoms. My hair is scarily falling out so much. I'm 34 in last 4 years I've Gina down hill. I know I have a very enlarged thyroid, also have multi nodular grotire. How can I keep bein told my bloods are find and its depression (I'm not feeling like this is making me) I'm sure you are aware of symp with hash so won't waste to much of your time listing them. Just need advice to what bloods I should be asking for also to be carried out and information to give my doctor I'm not good at explaining she always over powers me verbally. These are my last bloods done in October 2016 with GP and November 2016 with ENT:

October 2016:

*note bloods done at 2pm

B12-180 ng/L (191.00-900.00ng/L)

Coeliac disease screen - 1 kU/L (0.00-5.00 kU/L

Serum ferritin - 48ug/L (10.00 - 160.00) ug/L

Serum free T4 Level-14.2pmol/L (10.50-24.50)pmol/L

Serum TSH level- 0.64 mU/L (0.27-4.20mU/L

November 2016:

*note bloods was done at 8:45pm

Enlarged thyroid confirmed via scan (multi nodular grotire)

TSH 1.55 mIU/L (0.27 - 4.20) mIU/L

Free Thyroxine 13.6 pmol/L (12.0 - 22.00) pmol/L

Total T3 1.8 nmoI/L (1.3 - 3.1) nmoI/L

[Clutter]

Jaylou82,

Symptoms can precede abnormal thyroid levels by months/years. The fact that you have a multinodular goitre means your thyroid is dysfunctioning even though bloods are not yet abnormal.

TSH levels fluctuate throughout the day and it is higher early in the day so it's not surprising that TSH was 0.46 in October and 1.55 in November. TSH 1.55 is low-normal but FT4 13.6 is low in range. In the UK NHS treatment wouldn't commence until TSH is over range or FT4 below range.

Ask your GP or ENT to check thyroid antibodies to see whether you have autoimmune thyroiditis (Hashimoto's). NHS will only test thyroid peroxidase (TPOab) but some members are negative for TPOab and positive for thyroglobulin antibodies (TgAb). If you are negative for TPOab it may be worth ordering a private thyroid test and have TgAb done too.

Ferritin is optimal half way through range to around 100. You might want to supplement iron which should be taken with 1,000mcg vitamin C to aid absorption and minimise constipation. Retest in 4-6 months because too much iron is as bad as too little.

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I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Jaylou82]

Thanks for your reply TPOab not taken as far as I'm aware, I've been B12 def for 13 yrs untreated. I'm assuming as 2003 I had low B12 needed an injection had one then never see my doctor again about it and wasn't mentioned to me again. Only recently I've been on top of this. Last sets of B12 bloods have be 180 below. Having injections every 3 months. Altough I feel I should be having more often. Will ask for the following bloods adviced see where I go from there. Just find it strange how my thyroid is huge and have all these problems yet bloods normal.

[Clutter in reply to Jaylou82]

Jaylou82,

Thyroid can become enlarged in order to produce sufficient thyroid hormone.

healthunlocked.com/pasoc will help you with questions about B12 deficiency and frequency of injections.

[Hidden]

With the problems you are describing it is probably inevitable that you will need a total thyroidectomy some time soon. I recognise what you describe as that sounds precisely what I had 11 years ago now. Your docs will probably be leaving it as long as possible as the op is quite dangerous, not necessarily life-threatening but holds the risk of you losing the ability to speak and other nasties. I was never given the sort of blood tests you have had; the decision to operate was based purely upon my symptoms, which were beyond bad, they were truly horrible. At least they have told you what your problem actually is.....I was told nothing!

Query you doc to see if that actually is the action they are taking. The big problem is that the longer the MND is left to its own devices, the more complicated will be the operation and therefore the more dangerous to you. The possibility will be that you feel absolutely marvellous for the first few week after the op, but don;t be fooled!

Be sure to reject levo and start straight away on NDT to protect your entire body from unnecessary long term damage. If I were you I would order some today.

[Jaylou82 in reply to Hidden]

Hi thank you for your reply and advice. It is so frustrating that they just dismiss you, and follow guide lines. I feel dreadful, I know how I feel and yet I'm told it's anxiety or depression. My main concern is leaving my thyroid, clearly I don't want to have it removed but how is it going to go back to how it is meant to be ? I just assume over the years it has grown that it will continue to do this. Then I have the worry that it grows and causes such problems that they won't be able to remove it when it would need to be removed. Do I just agree to have it now, and hope for the best. Or do I even agree to have it knowing then that they will treat me for thyroid issues as they have to clearly then. I just don't want to keep feeling like this.

[Clutter in reply to Hidden]

Panda321,

Jaylou82 hasn't said that the goitre is impacting any nearby organs so it is unlikely she will need a thyroidectomy any time soon. If a thyroidectomy becomes necessary there is no need to reject Levothyroxine. Most people do well on Levothyroxine when optimally dosed. Thyroidectomised patients sometimes need the addition of Liothyronine (T3) to feel well but NDT isn't a prescription option in the UK for most people.

[Hidden in reply to Clutter]

Mine also was not impacting any major organs either, or so I was told before the op. The surgeon changed his mind when he saw what was inside. My previous goitre HAD been impacting my breathing and the symptoms then had been vastly different. I agree that NDT is not currently a prescription drug as I know to my cost, but it certainly should be an option for all TT people.

[Jazzw]

Jaylou, in all honesty I don't think your thyroid is the problem. You haven't got thyroid antibodies and your TSH looks normal. It's that low B12. You almost certainly need jabs more often than every 3 months - did you have loading doses when you were first diagnosed with low B12?

[Jaylou82 in reply to Jazzw]

Hi, thanks for your reply. It's great to know that the advice I'm getting on my bloods is normal. Gives me some hope. No I was never given loaded doses. Just one injection and told to come back in 3 months. Although a week after I did trick the nurse into giving me another injection 🙈 Feel bad for doing that but see so much advice that I should have been having loaded doses. I do actually have my B12 a home with me just don't have the needle or I would do it myself. I felt a little better after those 2 injections 3 weeks ago, but back to feeling worse then before now. I have been taking 2000 B12 daily vits also Vit D 1000 daily. I did stop the Vit D for a few days as I was getting really bad headaches and wasn't sure if it was because I was taking to much Vit D. Your advice would be greatly helpful. Thank you