So I got to see the endo yesterday, finally a doctor has listened to me! I told her how I’ve been feeling, although with my useless brain at the moment I forgot to mention a few symptoms, she took note and has decided to treat me.
She wasn’t very keen on giving me thyroxine as my tsh has been ‘swinging’ as she put it over the last few years and she’s worried given the two bouts of hyperthyroidism in my teens that my thyroid could go hyperactive again as easily as it’s going under active now. She said that I wasn’t hypothyroid but that my thyroid is struggling. Apparently I have a small goitre too. She has decided to give me a trial of 25mg of levothyroxine for the next three months and to see her again at the end of the three months.
She was also shocked by how low my B12 and Ferritin are and immediately put me on ferrous fumerate for three months (to continue for every period from there on after with an over the counter for the other three weeks) and is writing to my GP to request urgent B12 loading doses. She was shocked that two GPs at the practice completely ignored the results and just told me to take over the counter supplements. She has also tested me for celiac disease. Unfortunately with my ropey brain at the moment I forgot to ask if she would test me for pernicious anaemia but I will ask the GP when I see them for a repeat prescription in three weeks time.
It feels so good that I’ve finally had a doctor take me seriously and not basically treat me like a hypochondriac!
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bubblesmcgee
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Your endo sounds good and you are very fortunate as most people here including me are very unfortunate in having Endos who are useless and only interested in the sound of there own voice!! I am on my 3rd Endo and i know that both of the previously completley were uninterested in my iron results and hashi/graves-ive had to sort mine out myself-great hang on to that one bubblesmcgee.😊😊😊
Well, she has good people skills, I grant you. But I'm not sure she knows much about thyroid.
she’s worried given the two bouts of hyperthyroidism in my teens that my thyroid could go hyperactive again as easily as it’s going under active now.
No, that's not how it works. If you are hypo, you cannot 'go hyper', it's physically impossible. But, reading your post, the first thing that came into my head is 'Hashi's'. You have Hashi's. And if she doesn't recognise the signs, that bodes ill for the future. What she should be doing is testing antibodies for confirmation of her suspicions, but it seems she doesn't even have any suspicions.
She has given you too low a dose which is likely to make you feel worse, rather than better, so that when you tell her at the end of three months - which is way, way too long - that you don't feel any better, she will say oh, well, you're not hypo, then. I'm sorry to rain on your parade, but it's all wrong.
I’ve already had my antibodies tested, TGAb 602 (0-115) and TPoAb 486 (0-36) were both raised.
I had to fight for 25mg, she was going to leave me with nothing so it’s at least a start. She’s not convinced that my thyroid is causing all of my symptoms as my B12 and Ferritin are both so low and the fact that I work shift work.
I agree with Greygoose, Hashi's shouts out with your first post. Did your endo not mention your raised antibodies and recognise autoimmune thyroid disease aka Hashimoto's which is where the antibodies attack the thyroid and gradually destroy it?
She did mention autoimmune thyroiditis and agreed when I said so that means I have Hashimotos but then also stated that I’d had two bouts of Graves from my notes.
The 2 Graves bouts were very likely "Hashi's flares" where the antibodies attack, the dying cells dump a load of hormone which causes fluctuations in results and symptoms.
Your vitamin D is also too low at 60. Are you supplementing? With Hashimoto's many of us find Better You Vitamin D mouth spray is good as avoids poor gut function. Aiming to improve to around 100nmol.
Perhaps try 3000iu spray once daily.
Getting started on ferrous fumerate and loading B12 injections first. Then look at adding vitamin D if not on some already
Best to only start one thing at a time
As you have Hashimoto's you are more likely gluten intolerant than coeliac, but at least she ran coeliac blood test. However if the result is negative you are still likely to benefit from strictly gluten free diet.
If coeliac result is positive you have to stay on gluten rich diet until endoscopy. Should be max 6 week wait
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Would agree with the others that 25mcg is too small a dose. It can make you feel worse. It's enough to switch your own thyroid production down or off, but not enough to offer good support. Make sure to get retested after 6-8 weeks. Dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
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