I posted about my worries concerning a possible Hashimoto’s flare up a couple of weeks ago and got amazing support from the community. It encouraged me to be more proactive in my research to learn why I feel so unwell all the time. I had a lot of blood tests done, including for Lyme disease ( but it will take a while to have the results for Lyme.)
My ferririn is at 27, TPO are negative and my tsh and free T4 in normal range, my cholesterol is low normal range and the doctor is adamant it’s not my thyroid causing my symptoms. However, my ana antibodies are positive: 1:160 with homogeneous pattern which could suggest another auto immune disease. My ana were negative when diagnosed with Hashimoto in 2009. I have been referred to a rheumatologist to check if I could have fibromyalgia or lupus. ( I really don’t think it’s lupus though.) Thank you again for this incredible community. I am anxiously waiting for a definite diagnosis but don’t feel as lonely and scared as before 💛.
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Seahorse76
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As you have Hashimoto's in the past, you still have Hashimoto's now, even if antibodies are now within range
Important to test both TPO and TG antibodies too
You would need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Ferritin is very low. Has GP done full iron panel testing
Obviously you need FT3 tested at same time as TSH and FT4
Fibromyalgia is often linked to low FT3....i.e. Poor conversion of FT4 to FT3
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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I started to see this new doctor as I had heard positive experience from patients who had thyroid issues online and so I thought at first that she would give me the medication I need if she judged it was necessary.
I was very surprised during the follow-up appointment when she said my thyroid is fine and that she thinks I have lupus ( she seemed really confident too when she said that.) I never got the FT3 or anti-TG antibody tested, unfortunately. I would love to get everything tested at the same time for my thyroid but I don’t know how I will be able to do that here in Canada. I will probably have to see a naturopath but the fees are really expensive and money has been tight for a while... Should I start considering self-medicating with ndt?
You shouldn't self medicate without knowing what your T4 and T3 results are, otherwise you won't know if you are over-medicating.
If you could get a hold of the results that showed elevated antibodies, take them along to your follow up appointment.
I have tested with high antibodies in the past, and managed to get them back into range again. As Slow Dragon says, that still means I have hashimotos, but because my results are optimal, I don't need medication. You could be the same, but you would need to know what your results are before you can judge.
That sounds like a load of rubbish to me - and a strong dose of denial on your GP's part. You've been diagnosed with Hashi's and Hashi's doesn't go away. Antibodies fluctuate, so just because they were low in the latest test doesn't mean they've gone away, either. You still have Hashi's. I'm afraid your GP has no idea what she's talking about.
I am afraid you are right, greygoose. I really had my hopes up with this new doctor but never got a full thyroid panel done and yet was told it can’t be my thyroid who is the problem.
She agreed my FT4 is on a “low-ish normal range”, yet the next time I saw her she said I don’t need medication... It is very confusing right now. I am considering self-medicating if I can’t find a specialist who will help me...
Do you think it would be a good idea to start looking toward ndt alternatives if I can’t find a doctor that understands and is willing to give me Levo? I have been thinking about it for a little while but am also a bit scared as I don’t know which brands/ where to buy it from/ which starting dose...
The starting dose is the least of your problems. You just follow the rules for taking hormones - all hormones: start low and increase slowly. With NDT that would mean starting on 1/4 or 1/2 grain, and increasing by 1/4 grain every two weeks, etc.
More of a problem is actually finding NDT, these days. It's becoming more and more difficult to get hold of, and less and less effective, according to some people - I don't know, it didn't suit me so I haven't tried it for years.
Levo would be easier to obtain, and easier to dose, and would give you a base-line on how well you convert. You could then tray adding in T3 if you need it.
But, there is no one-size-fits-all, you have to find what suits you best, be it NDT, T4 only, T3 only or T4+T3. And, you can only find that by trial and error, No-one can actually tell you what will suit you best.
Thank you so much greygoose for this very insightful answer. I still have an old Canadian Levo prescription from 2010 I can show as a “proof” I took it for a year and a half. That is a shame ndt is becoming more difficult to find and potentially less effective... I suppose I will try (again) to find a different doctor and beg for Levo before I seriously consider starting ndt.
You're going to see a rheumatologist, aren't you? Ask him/her if s/he thinks your symptoms can be due to thyroid. They often know more about it that endos or GPs.
Yes I have been referred to a rheumatologist 😊. It could take 6months until I have the appointment so I will stay patient. ( I might go back to the same doctor first and insist I don’t believe my thyroid is fine, if I feel brave enough 😂.)
Pay for a private appointment if you can afford it. I think it costs about £150 depending on the Consultant. I would not wait 6 months because you will get worse. Also if you cannot afford private why don't you ring the Consultants secretary and ask if there are any cancellations because she will then let you know when an appointment is available. I worked for the NHS for several years and my husband was a Hospital Manager so I know how it works.
Thank you so much for your suggestions. I wonder if the same thing applies to Canada ( I live in Vancouver). I would prefer not to have to wait for too long, that’s for sure. I feel like the wait will be driving me mad 😅.
Thank you Lora, I received your message .😊Yes I agree with you, we have to be our own health advocates, especially if no one else wants to listen. I used to trust the doctors 100% but not as much now and I am really eager to feel better.
Lora, I seriously cannot thank you enough for all this wonderful information 💐 🤗. If you have the chance to ask this person, I would be most grateful, but you already have given me so much support and hope that I feel spoiled ☺️.
I also have a positive ana, saw rheumatologist who said hashimotis can cause a positive ana, he ruled out lupus but did say i had tender spots that could be fibromyalgia, but i dont have fibro symptoms, so im going with my symptoms being thyroid related atm
Thank you so much for sharing this insightful information with me sbadd. It makes sense that Hashimoto’s could cause positive ana antibodies, and I thought it would be what the doctor would have assumed. Imagine my surprise when she said: “oh yes, so you have lupus and according to your symptoms ( bad memory and so many others), it has attacked your brain”. That was one weird moment as I absolutely didn’t expect that kind of diagnosis... I am glad you were able to get a diagnosis other than lupus with your rheumatologist. I am eager to see the rheumatologist and see what’s wrong with me.
I thought about b12 deficiency for myself too ( event went to the pernicious anemia forum), but I am unsure that I have a b12 deficiency as my levels aren’t that low. I am taking an iron supplement as I have low ferritin and it has b12 in it also so maybe it will help?... Are you getting b12 injections or taking sublinguals/pills?
I was given 6 loading doses in jan, i dont have PA but my store levels were low, i had terrible side effects though from injections so opted for no more, there are so many things that can cause a range of symptoms, so just getting everything in balance i guess helps
I am so sorry you had a bad reaction to the injections and I can totally understand why you wouldn’t want to continue with them 😰. Yes everything in balance is best. I really have to increase my ferritin level apparently.
Your Ferritin needs to be at least mid-range - usually around 70. So your stored iron is VERY low. This could reflect on the iron circulating in your blood. Oxygen sticks to iron in the red blood cells to be transported around the body to oxygenate and give life. Low iron = Low Oxygen = many symptoms.
Also you need good levels of Ferritin to assist the conversion of T4 into Active T3. Good levels of B12 - Folate - VitD are also needed.
So as suggested by SlowDragon you need a Full Iron Profile done .. 😥
So nice to talk to you again .😊 Your explanation concerning the relationship between iron and thyroid makes so much sense and in a way, it’s wonderful how everything is interconnected all together.
It’s rather unfortunate that my ferritin level dropped from 40 to 27 in one month, despite supplementing with iron 😔. I should really get this full iron panel done, I agree. I have been going to the doctor so frequently that I feel ashamed for going back again soon though.
You only go because you are wanting answers and support so do not feel ashamed. I saw your post on the Fibro Forum - please make sure everything is ruled out first as having Fibro on your notes can mean everything in the future will be blamed on Fibro - sigh !
Click onto my username and you can have a quick read of my Bio - Fibro diagnosed in 2000 - Hashimotos in 2005 ...
Thank you for your kind words of encouragement, Marz.😊 I am now going to read your Bio before heading to sleep, and will definitely make sure I rule out everything before fibromyalgia...That’s scary to think a diagnosis can impede other future diagnosis.
Fibro - myalgia means painful muscles and that can be caused by many things , gluten sensitivity - low VitD - low B12 - low thyroid and inflammation. In days of old it was called Fibrositis I believe .. 🌻
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Another alarming article about a possible cause of thyroid and other endocrine illness
Neg ANA, positive TgAb, negative TPO
Thoughts on the underlying causes of Thyroid disease
