This time last year I thought I had my Hashimoto’s under control. I had been following AIP (autoimmune protocol) for 8 months. My health was the best it had been in years (diagnosed in 2014). In July last year I noticed my abdomen had become swollen slightly. This has gradually increased and continues to increase. I feel and look very different (very distended and my diet doesn’t not account for the stone in weight gain. I also have a slight shortness in breath and need to clear my throat more often. My GP has carried out ultrasound scans of my abdomen - liver, kidneys, ovaries. They have also done a chest X-ray. They found a hemangioma on my liver, but my GP is not concerned about it. I take T4 (75mcg) and T3 (10mcg)
My last thyroid panel:
TSH 1.2 (0.2 - 4.5 mU/L)
T4 12 (9-21 pmol/L)
T3 1.0 (2.5 -4.9 pmol/L)
My doctor doesn’t know what’s causing the weight gain and doesn’t seem concerned about it. I believe it’s water retention. If anyone has any advice, I’d love to hear it...
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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, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
If it is these results show you need dose increase
Ft3 is BELOW range
Ft4 low in range
Do you split your T3 into 2 x 5mcg normally
Suggest you add third 5mcg dose T3
Retest in 6-8 weeks including vitamin D, folate, ferritin and B12
Hi Slow Dragon, thanks your reply. I’ve been following your posts for a while and tested as you advise. Up until this week I have been splitting my T3 into 5mcg twice a day, but the cost of the T3 my pharmacy sources for me has gone up, so to keep costs down they have found a 20mcg tablet and cut this in half (quarters did not cut well), so I have just started taking 10mcg once a day. I will try adding in the extra 5mcg and test again in 6 weeks.
Hi SlowDragon, I got my thyroid blood test done privately almost 4 weeks ago (results below). It was done at 8:45, my last dose of T4 24 hrs before and the last half of T3 (5mcg) at 10pm). When the test was taken I was on 100mcg T4 and 10mcg T3 all taken in the morning (except on day of test). I now can’t afford T3 as the price has increased, so I will retest after 6 weeks on 150mcg T4 started 3 weeks ago (my Dr told me to revert to that dose if I couldn’t get T3). I plan to write to my GP to ask for an NHS prescription for T3, so I may go back to this at some point. I’d appreciate your thoughts on my results. It looks like I am over medicated? Also, my vitamin D looks low. Should I be looking to increase it with supplements? If so, how do I work out what dose I should be on? I’m guessing I can only reduce the antibodies with diet?
Over the past year I’ve steadily put on weight and recently I’ve experienced muscle weakness. For the last 6 weeks I’ve been following the Izabella Wentz protocol and eating a nutrient dense diet, free from gluten, dairy, soy, corn, caffeine etc...
CRP HS - 0.23 mg/L (Range: < 5)
Ferritin - 105 ug/L (Range: 13 - 150)
Folate - Serum - 16.15 ug/L (Range: > 3.89)
Vitamin B12 - Active - >150 pmol/L (Range: > 37.5)
I’ve been referred to Endocrinolgy at a private hospital in Edinburgh, but it could be a while before I see anyone due to the impact of coronavirus on the waiting lists. When I get an appointment, I’ll discuss the T3 levels - thank you for your opinion. Thanks also for the update from the Scottish government. I’ll contact Elaine Smith. Thanks again for responding.
Hi SlowDragon, I’ve emailed Elaine Smith and I’ve requested an up to date list of thyroid specialists from Thyroid UK. On my previous copy (from last year), I just see private specialists listed (some also working in the NHS). How do I go about getting to an NHS specialist? Does it all need to go through my GP? My previous GP has retired and the replacement is very unsympathetic to Hashimoto’s. I had to ask him to refer me for the private appointment that I am waiting to hear back from. Can I request him to refer me to an NHS specialist from that list? Or can I contact them directly? In the past they have always said there is a very long waiting list..
Thanks for helping me push forward, I can’t tell you how much I appreciate it.
How do you take your T3? Do you always take it on an empty stomach, etc. just like you do levo? That FT3 is incredibly low for someone taking T3. Has your doctor seen those results? If so, how can he not know what's causing your problems? I am gobsmacked!
Hi Greygoose, thank you got your comments. I take T3 first thing with my T4 (both Mercury Pharma) and eat an hour later. When taking the 2 lots of 5mcg, the later does of T3 is harder to keep away from food, but I try to take it in between lunch and dinner. My T3 previous to the test I sent would normally be around 3 pmol/L. I was quite unwell when that last test was taken (I am feeling better now) so I am not sure if that affected my results. Due to coronavirus I have not been back to my GP to request another test. The other complication. Is that I was prescribed T3 privately (by Dr Toff) a couple of years ago. I pay for this. He was happy to give the prescription to my GP, but she doesn’t have the expertise to trial increases etc or at least has no interest at this point. The big question on my mind is where to go with the significant swelling that has rapidly increased over the last 6 months. I’ve not had this previously. I feel like if I knew whether to investigate with a medical practitioner or an endocrinologist or some other specialist that would help. To date diet (something that helped me significantly before) does not alleviate the symptoms. If you have any further thoughts/advice I would appreciate them. I will progress with the increase in T3. Thanks.
I think the truth is that you cannot control Hashi's with diet. It may seem like that for a while, the Hashi's is quite with not drastic swings, but all the time the immune system is eating quietly away at the thyroid and you end up really hypo, like this.
I'm not surprised your doctor is not interested in T3. She knows nothing about it. She didn't learn about it in med school. She doesn't know what it is nor what it does. It's just voodoo medicine to her. So, unless you find a doctor that knows more about thyroid, you're on your own, like so many of us. But, you obviously do need an increase in T3 right now, there's just no other way of getting on top of things.
Hello, you sound similar to me, I had a private gut test done and have severe gut dysbiosis which is causing bloating, inflammation and other horrible symptoms.
I’ve taken a lot of anti microbials for SIBO and now I’m taking probiotics and bone broth to heal my gut.
Hi Donnaca, thank you. Were you always like this or did it happen all of a sudden? Also, was your bloating in your abdomen for in your legs too? I have thought about testing for SIBO, but I’m not sure if that’s what I have. I was due to have a stool test done privately to look at my gut health, but the coronavirus has delayed my appointment with the practitioner I was seeing. I take probiotics and bone broth. I used to see great improvements with a healthy nutrient dense diet, but that has disappeared since I became swollen.
It is hard to know what it is, I have had bloating in my abdomen for most of my life, I got a thyroid problem as a child, my leg swelling (only my left) happened 3 years ago, it’s seems to have improved a lot with fascia blasting (look up Ashley black) This gets the lymph moving and also doing a SIBO protocol, from my research it looks like most people have SIBO.
There are some probiotics called Saccharomyces boulardii which I’m finding helpful - I use opti bac and take 5 a day spread out.
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