I've not posted on here in a really long time and would be grateful for some thoughts. I was previously prescribed 50mcg levothyroxine due to high tpo antibodies and gynae advice to keep tsh at or below 2.0 due to recurrent miscarriages.
I actually took myself off the levothyroxine due to struggling to conceive at all whilst taking it (over 2 years, might have been coincidence?)
My latest blood test shows even higher TPO antibodies >1300 and TSH 4.02 (0.55-4.78)
B12 343 (180-900)
Serum Ferritin 20 (15-300)
Vitamin D 75
I'm planning to request Dr appointment to discuss results and possibility of re-starting levothyroxine but would be grateful for any thoughts on these results and advice on next steps.
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Chasing-rainbows
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When trying to get pregnant it is important to have thyroid in check. Miscarriages can be due to so many different reasons with hormone imbalances being a big one. I found out about my thyroid during fertility testing. I also had a miscarriage. The next time I got pregnant they did blood work same day. I had to take a progesterone cream because that was hormone was a little low. Be pushy, ask questions, and don't be afraid to call out your Dr and ask why or why not.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
GP should do a iron panel to include serum iron, transferrin saturation and total iron binding capacity as we as Ferritin to confirm iron deficiency, plus a full blood count to see if you have anaemia. You can have iron deficiency with or without anaemia.
Your ferritin is way too low. Needs to be up around 90. Do you suffer hair loss? GPs will be happy if your result is just in the range, but that's poor. You either need to supplement or eat a lot of liver pate, black pudding, liver etc. If you go back onto Levo you will struggle to convert it with B12 and ferritin low like this.
Hopefully my GP will put me back on levothyroxine, my haemoglobin was 145 (115-165) and RBC 4.85 (3.80-5.50) Coeliac test was negative. Lupus test was requested but not done as not enough samples taken for the test.
On waiting list for gynae but hoping GP can help in the meantime with the thyroid side of things. I'm taking a vitamin d supplement and folate but no B12.
Before you supplement with B.12 your GP should check first that you do not have Pernicious Anaemia and if you do have P.A. you will need regular injections of B12.
It is very, very important to have B12 injections due to the fact that our body cannot absorb B12 if we have P.A.
I have P.A. and my mother did too.
My mother - some years after being diagnosed she was told her blood was now fine and she needed no more injections. We are apt to follow what the doctors tell us. I said "that's good Mum that you don't need injections".
Unfortunately, for my mother and the family is that she developed stomach cancer due to not having regular B12 injections (stomach cannot absorb B12) and the family were horrified and we had to plead for more pain relief before she died.
That's terrible, I'm so sorry you all had to go through that. It is unacceptable really. I find it so hard having to push for answers rather than trusting the GPs to make the right decisions, but it seems to be the norm that things are missed which is so worrying. I will mention the B12 and Ferritin levels when the GP calls me back, along with asking to me put back on Levothyroxine. What would a healthy B12 level be?
you have high antibodies this is known by medics here in UK as autoimmune thyroid disease. Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but a further 80% find gluten free diet helps, sometimes 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
As your coeliac result is negative you can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten see if symptoms get worse.
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
You've had a lot of advice on here by people with more knowledge than me, but I just wanted to add that I've been on levo for 8 months and when my blood checks have been done to check dosage, my Dr says their advice is to keep TSH under 2.5 once on levo. (ie not for fertility reasons but a general standard) This accords with what your Dr has said but if your TSH is now over 4 maybe you should be back on levo? Good luck with your journey into parenthood. I'm sure it will happen given time and when you get back to optimal health. All I know is that thyroid affects everything in the body and once stabilised hopefully things will generally improve.
Thank you all for these replies, really appreciated. Fingers crossed to get back on track and figure out the way forward. Autoimmune problems are so frustrating!
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