I’ve learned more here in the last year or so than I’ve ever learned from doctors. I’ve also come to know that I’ve probably been on too low of a Synthroid dosage for far too long.
I am hypothyroid with Hashimoto’s since 2005 or 2006. I had a goiter on my parathyroid and had surgery to remove it (half of parathyroid). The surgeon put me on 50 mcg of Synthroid and from there my pcp checked only my TSH and T4 until I started learning more because I’ve felt so poorly over the years and my pcp chalked it up to fibromyalgia and CFS because I had a traumatic brain injury in 2008. I was unknowingly severely anemic until in 2015 my dr thought to have my ferritin checked- it was 4. I had two iv’s of iron that helped. I do not eat red meat or pork, just poultry. I have a hard time digesting most vegetables, I have chronically dry skin, hair that is always falling out, aching joints and extremities, and I get very fatigued midday, along with having a hard time staying asleep more than 4 hours thru the night. I take 50 mcg Synthroid around 6 am, 5 mcg Liothyronine around 7 am, and then wait an hour for a cappuccino, and 4 hours for vitamins.
I finally had my doctor agree to trying me on T3, since he wouldn’t increase my T4, about 9 months ago. Furthermore, in Jan 2023 for the first time I requested to have my thyroid antibodies checked bc it never was, and I tested positive for Peroxidase Antibodies.
Following all the advice here with getting tests at the right time and which tests to ask for, I requested from a new pcp, who seems like she wants to help me, the following tests- which I’m going to share below. I would appreciate if anyone can help me understand what I need to convey to my doctor based on these results, to hopefully get me the help I need to feel better.
This is a copy/paste from the calculator that was shared on this site. Please let me know if any other info is needed. Thanks!
TSH 2.193 mIU/L (0.55 - 4.78) 38.8%
Free T4 (fT4) 1.07 pmol/L (0.89 - 1.76) 20.7%
Free T3 (fT3) 3.98 pmol/L (2.3 - 4.2) 88.4%
T4:T3 Ratio 0.269
Vitamin B12 572 nmol/L (211 - 911) 51.6% (I’ve had 3 B12 injections this year- Jan, March, and two weeks ago)
Vitamin D 73.8 nmol/L (30 - 100) 62.6% (I take a supplement)
Ferritin 39 ug/L (7 - 271) 12.1% (In 2015 it was 4. After receiving the iv iron it has continued to drop since then)
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I take 50 mcg Synthroid around 6 am, 5 mcg Liothyronine around 7 am,
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
So was test done with last dose levothyroxine (synthroid) 24 hours before test ?
Day before test did you split 5mcg as 2 x 2.5mcg with last 2.5mcg at 8-12 hours before test ?
Request 25mcg dose increase in Levo and retest again in another 8-10 weeks
As you are very hypothyroid at moment likely low stomach acid
This makes it difficult to digest food and absorb vitamins
Ferritin often low with low stomach acid
You need to retest FULL iron panel
If not eating red meat everyday, likely to need iron supplements
retest 3-4 times a year if self supplementing iron
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Thank you, SlowDragon, for your thoughtful reply and info. I had my blood drawn at 6:45 am, so the day before the test I took the Synthroid at 7 am and the Lio at 8 am. I’m not able to split the Lio bc it breaks up when I’ve tried.
I don’t know how to tell if I have low stomach acid. For years my pcp had me on Nexium and through my own research came to discover that it was causing more stomach acid problems for me, so I stopped it. I do feel better off of it, but continue to have a hard time digesting vegetables.
I previously tested negative for Coeliac disease, though I understand that I may still be sensitive to it.
I will ask my doctor to increase the Synthroid- I’m guessing slowly to not shock my system? But at 130 lbs, I know my dosage is not appropriate for my weight.
Since I am able to get the b12 injections, do you think ai should stay on them since they help my dorsal foot pain a lot.
I am going to have to see about an iron supplement that won’t hurt my stomach bc of not eating red meat, and hope that will raise my ferritin.
Does it sound reasonable to wait to try gluten free until I see how I do with the increase in Synthroid?
Since I am able to get the b12 injections, do you think ai should stay on them since they help my dorsal foot pain a lot.
Have you been tested for Pernicious Anaemia
if tested positive you will definitely need ongoing B12 injections
If not you might be fine on daily B12 supplements
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Thanks for the info and recommendations. I’ve never been tested for pernicious anemia and I will speak with my doctor about it. Knowing I’ve been anemic for most of my life, I’d think there to be reason enough to test me.
A warning. The test for PA only identifies PA in 50% of cases. So it's not a great test and the danger is that a positive result confirms PA but a negative doesn't mean you haven't PA. The danger is that a GP might wrongly interpret the test!
If b12 shots help your foot then why not continue with them? More significantly the fact that you respond to b12 h8nts that you may be deficient. Have you checked your symptoms at B12d.org?
Finally NICE recommend against b12 serum testing if you are having b12 injections because the level should be very high and there is a danger that the high result is misinterpreted as "you no longer need b12". However your result looked low to me given that you have had injections.
The PA site on HU is a fantastic source of info re b12.
Thanks Cornwaller, I appreciate your commments and I will look into the PA site here. A 50% accuracy reading is crazy! It’s scary how much is still unknown, which is why I felt so thankful when I stumbled across this website and group. I’m learning much more here and applying it to my decisions and medical care- and this is what has helped!
The sad thing is that I’ve been living with severe dorsal foot pain for 20+ years, saw many specialists, and not one helped me nor suggested b12. The first b12 injection, at my suggestion to my dr this past January, took about 85% of the dorsal pain away(with in a few days)! But then by week 6 post injection, the pain started to come back slowly, but to full-blown again, till the second injection.
I am not familiar with b12d.org, and so I will check them out.
So antibodies are high this confirms cause is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first
Or buy a test online
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Links to USA thyroid specialist websites discussing gluten and thyroid
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
SlowDragon has given you excellent advice, as I was also given excellent advice by her a short time ago.
I did not test positive for gluten allergy but find I am much better on a gluten free diet. I made the mistake of stopping gluten before the test, because I did not know I should continue until the test and therefore my test came back negative. On a visit to your country I struggled to get decent quality gluten free food so do check labels carefully if you decide upon gluten free after your test.
I have been iron deficient anaemic for decades (although I was never told this at that time) and at a recent gastro appointment advised to stop taking iron daily but a higher dose several times a week, with vitamin C at the same time. Do not eat or drink any dairy products for an hour before or after to aid absorption of the iron. At the moment my iron levels are high following an iron infusion but I intend to try this suggestion when they have dropped. Iron infusions can carry risks so oral supplementation is usually recommended first but it can be a longer term process.
Do you have B12 test results before you started B12 injections? You are having B12 injections at a rate normally suggested (but usually completely inadequate) for a patient with B12 deficiency or Pernicious Anaemia. Therefore your recent B12 test result is not a true picture because you are already having treatment which makes your results questionable. Do check out the Pernicious Anaemia Health Unblocked website and maybe post all your B12 results there for advice. Most people who cannot absorb sufficient B12 orally either use sublingual meds. or self inject B12 themselves.
Good luck with all the suggestions you receive. Check things out and as suggested by SlowDragon change one thing at a time. Best wishes
Hi Yorkshiregirl14, thank you for your comments and advice. My test for celiac was several years ago and I did not change my diet for it. The food in our country is mostly terrible, but I didn’t know it effected the gluten free options too, so if/when I try this, it’s good to know I will have to be extra diligent.
I appreciate the info on iron that SlowDragon and you have provided. Clearly this is something I need to start taking. Also, I was unaware that the iron infusions carried risks.
I’ve had a few b12 tests in the past. Here are the results, which used the exact parameters as the b12 test above, I just can’t capture them all in one screen shot.
May 31 2024, 572 (injection 2 weeks ago) Mar 29 2024, 958 (injection 2 weeks ago, plus taking b12 supplements. Dr instructed to stop the supps, because they were not helping my dorsal foot pain. Jan 11 2024, 470 Jan 27 2023, 639 July 26 2019, 352 Nov 11 2015, 310
I will check out the PA site here and share these results for any additional input since they do seem to have gone up and down over the years. I will say, that along with the dorsal foot pain improving, I also get a boost of energy for a week too, which feels so good, albeit short-lived.
Do be clear which results are after your B12 injections. The other aspect to bear in mind is that recovery from B12 deficiency and/or Pernicious Anaemia can take many months or even years. You will also see on the PA website that members sometimes inject B12 daily or more than once a day and they usually start with loading doses every other day.
Okay. I’ve never had a b12 injection until January 22, 2024. I’ll be sure to specify that on the other board(s) -thanks!
I can see I still have much to learn and I’m so glad to have people here that help to navigate bc the healthcare system everywhere seems insufficient, but what we also have to work with.
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