In June 2020 I was eventually diagnosed with Pernicious Anaemia. With the help and support from PAS, B12d.org and this forum I have managed to find a treatment plan that seems to be helping. At times I became so overwhelmed trying to process all the information whilst also trying to deal with all the symptoms that go with Pernicious Anaemia. The brain fog in particular.
My GP surgery was very helpful although they acknowledged their knowledge was limited. During the pandemic I have to visited the practice on 60+ occasions. Although ultimately I have now developed my own treatment regime which involves self injecting, vitamin supplements and gluten free diet. Which seems to be helping.
Following my recent experience I decided to look into hypothyroidism which I was diagnosed with in 1999. Since this time I have only had annual blood tests and my dose of Levothyroxine has been adjusted accordingly. That is basically it.
The dose was recently increased from 150mcg to 175mcg ( 100/50 mcg Almus, 25mcg MercuryPharma)
!Serum TSH level - (AENGE) - Abnormal-to 6.71 mu/L 0.30 - 4.50 m/L increase to 175ug and repeat in 3 months.
I have experienced many symptoms which could be related to PA or hypothyroidism over the years but they have never been addressed successfully. Written off as stress or some other vague cause.
My main problems at the moment is the ongoing issues with weight gain (I feel squishy) inspite of eating less, muscle weakness, hairloss, cold intolerance and intermittent fatigue.
Apologies for my ramblings.
I would really appreciate some advise regarding where I go next? Private blood tests?
I have the Thyroid UK information pack.
Thank you x
Written by
Divine1990
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Presumably you have Hashimoto’s (autoimmune thyroid disease) diagnosed by high thyroid antibodies
Essential to regularly retest vitamin D, folate and Ferritin
How often are you injecting B12
Do you currently also supplement daily vitamin B complex?
Taking any other vitamin supplements?
As someone with gluten intolerance, PA and Hashimoto’s it’s more likely to have poor conversion of Ft4 to Ft3
Bloods should be retested 6-8 weeks after each dose change in levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hashimoto's has never been mentioned or discussed with me.
I self inject B12 hydroxocobalamin every other day. I take b complex, methylfolate, vitamin D3 and Magnesium Gluconate. All following advice I received after my diagnosis of PA.
I will sort out a private blood test and post my results.
Most of those on forum could likely ramble on for a considerable time about their symptoms, the lack of adequate treatment and the ignorance of both doctors, endocrinologists and the "professional" associations supplying "recommendations" concerning the treatment of thyroid disorders.The most successful solution seems to be to discover as much as you can from other actual patients suffering similar problems and the improvements to their own health that they have found in the real world, far away from the "official" one you tend to find, promoted in all probability by the Pharmaceutical Companies.
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Latest blood test results, where do I start?!
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Am I on the right path with my T3 only treatment?
Again - Back To Square One - Where Do I Start?!
Where should I start with my diet? 
