Advice appreciated on blood results ahead of Endo Consultant appt 25/2

So tomorrow I have my 6th Consultant appointment in 2 yrs, and this time I am concerned as I really do not know what to say. I have picked up a copy of my latest blood test's as follows;

TSH 0.05 (0.35-4.7) below range

FT4 15 (7.8-21)

My last appointment 6 mtgs ago TSH was 0.001 and FT4 21 - I felt quite good on this, but recently I have not felt quite so good. Breathlessness, occasional pains in my chest, leg pains are crippling and also have a dodgy hip! Not to mention, blodd pressure dropping, dizziness, headaches, extreme tiredness, hair, eyebrow and eyelashes falling out. Now I seem to have developed what feels like a dry throat around the back of my thyroid region (if that makes sense).

I persuaded my consultant to let me continue with 150mcg that I was on and have now been on this for about a year and a half.

They won't test T3 at all, my adrenals are fine, but I now appear to have a low white and red blood count. I was severely deficient in Vit D last year and after a 3 nth course then replaced with Calcichew forever. My Ferritin is 22 (15-300), VitB12 189 (180 - 1130), Folate is 5.2ng/ml and sates deficient, glucose is 6mmol/L (3.6-6).

From what I can piece together is I appear to be showing signs of anaemia and borderline for future Type 2 Diabetes. I am dangerously overweight, at least 2x what I should be and I am 5ft 2. I did initially lose some weight when I started Levo, but now I just pile it on even though my appetite is suppressed.

I am considering seeing if reducing to 125mcg would make a difference and increasing with B12 & Folic Acid to see if that will make a difference.

I know there is no magic wand but I just need help. My Mum had the same condition and was diagnosed in her early thirties like I was. She sadly died 9 years ago of a heart attack at the age of 47. She wasn't overweight at all, but she was Type 1 diabetic since age 11, developed Hypothyroidism, hypertension and ended up with high chloestral. Because of this I have a major fear, and I feel like I am being let down by my consultant(s),

Apologies for going on but I could really do with some help in advance for my appointment on the 25th Feb.

I thank anyone in advance who can offer me some advice!

10 Replies

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  • Have you considered asking for a trial of T3?

  • Hi, I have discussed at the previous 2 appts but the consultant won't authorise it. Even though I saw a Neurologist last yr who thought I wasn't converting T4 to T3.

  • Well your levo wont be doing very much for you with low B12, low iron and low folates. It's bad enough having one low to knock your thyroid meds out, but to have so many low you must be feeling awful.

    Why hasn't your endo - with five previous appt under your belt - even got your vitamins sorted for you. Your conversion from T4 to T3 will be badly compromised with these vitamin levels and your endo needs to start sorting them.

    Can you not go back to your GP and ask to be referred for a second opinion and this time, after doing some research, ask to see an endo of your choice - it is allowed you know, you don't have to be stuck with someone who, after 5 appt's, has left you in this sort of state.

    Have a good look around this site that I have linked you and it will explain why, with low iron/ferritin levels your T4 will not be working properly, but please look into changing your endo as this man is obviously not a very good thyroid specialist.

    nahypothyroidism.org/deiodi...

    Moggie x

  • Also look round both of these sites regarding your very low B12 and folates.

    pernicious-anaemia-society....

    b12d.org/

    Moggie x

  • Your ferritin and folate are way way too low

    taking a lower dose of thyroxine will simply make matters worse and lower your free t4 furthur

    you need to rapidly address the b12,ferritin,folate deficiency

    until you get them back up well over half way in their ranges theres going to be little point taking thyroxine because you cant convert it into the t3 you need

    i cannot begin to work out what your endo is doing othan making hou sicker

    If i was in your shoes i would pile in iron plus 500mg vit c

    and get some t3 online and take that until ferritin is over 70 then you should be able to take thyroxine or switch to NDT

  • With the above advice do let us know how you get on with your appointment....good luck :-)

  • Because your appointment is so near, email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online Article by Dr Toft, who was president of the British Thyroid Association. Read Question 6 and ask the Endo to consider adding some T3 to your T4 (I don't say reduce your T4 because I don't think may not be on optimum thyroid meds). Ignore Dr Toft's comment, I think in the last para, where he makes a very unprofessional comment which I think a lot of doctors adhere to. Louise also has a list of NHS Endos/private doctors she can send you.

    I think it wiser to ask for a second opinion as the Endo hasn't done you any good so far. Why has the GP not treated your deficiencies either?

    Weight gain is common when you are not on an optimum dose of meds and T3 can be added to T4. TSH etc should only be used as guides not for diagnosis.

    A thyroid gland when not on sufficient thyroid medication may allow other diseases to develop, such as heart, diabetes etc. but the endocrinology don't appear to know this.

  • What did you think of the replies you received - feedback would be good.

    Moggie x

  • As other suggestions have said, I'd definitely go for second opinion. She my end wouldn't prescribe me T3 I had to wait and take advantage of a locum on one appointment! I lost three stones in as many months just by adding T3. However, it is really vital to get the anaemia and vit deficiencies sorted too (they weren't testable when I went hypo); I was obviously lucky to be OK on that front.

    I have said though, that if,at any time in the future, I'm refused a T3 scrip, I will buy it. It really has given me a quality of life I can live with,despite all the other bits I have dropping off!

  • hello everyone, I am hoping you are able to read this as I have not had the chance to be able to respond to you all until now. THANK YOU all sooooo much of the advice and words of wisdom you gave me, it was very very useful.

    As an update, my appointment was a bit of a mixed bag really. I have convinced the Consultant that I saw (which was a different one yet again) to test me for T3 - She won't do RT3 though as according to her the Trust wont allow this. Anyway she said that if it is abnormal then she will trial me on T3 - Great I thought, as after doing a lot of pre reading etc, with the help from you guys, she commented on me having a good knowledge of the illness and I am very sensible. What I couldn't convince her of was my low Iron, B12 & folate levels - she feels they are not low enough to be concerned about, yet she is happy for me to deal with these myself! Lol

    I have put on weight, again, this time a whole 1 pound in 6 mtgs, so that was a bit of a relief as I generally thought I had put a heck of a lot more on. (Still need got lose tons though).

    What she has said though is if my T3 is not abnormal I am discharged from the clinic as there is not much more they can do there that my GP can't deal with.

    For as sad as it sounds but I am so praying that my T3 will be abnormal just so I know what course of action and treatment I will be dealing with rather than being back at square one.

    looks like a trip to Boots is in order tomorrow to try and obtain necessary vitamins, Iron, b12, folic acid, selenium.

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