Hello lovely people! Hope you are all plodding along. I am here before my annual endo visit next week with my bloods. I’ve been stable on 20mg of T3 and 100mcg of T4 for almost 12months.
In the last few months I have developed a conglomerate of worsening joint symptoms and after the usual fight on my hands not to be labelled someone with chronic pain ( not something to be dismissed, just something I truly don’t believe I am suffering from) I have been told that the auto immune rheumatology Professor thinks I have probable Psoriatic Arthritis from all my clinical symptoms.
My question is two fold- firstly the usual opinion on my bloods.
T3 3.7. (Previous 5.1 once on optimal treatment ) (3.5-6.5)
T4 -10.1 ( prev 16.7) (10-18.7)
TSH - <0.01 (prev 0.01) (0.05-4.78)
Secondly is it possible that the flare up of my symptoms has caused my thyroid bloods to be worse? No idea if the 2 are related.
I use all my usual hypo symptoms hair loss, fatigue, constipation, menstrual issues, headaches - but the brain fog is horrendous!
I have been taking my meds as prescribed as well.
Thanks in advance 😃
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Slappiduck
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No, it's the other way round: your worsening bloods have caused your symptoms to flare up. It's low T3 that causes symptoms. Basically, the lower your FT3, the worse your symptoms. Why have your levels dropped like that? Have you had a reduction in dose?
Sorry I meant flare of a different auto immune issue ( the Psorartic Arthritis), which was finally had enough for someone to listen 🎉. Wasn’t sure if one issue could trigger a change in another in a knock on effect.
Nope, no change in meds. Been on 20mg Liothyronine and 100mcg Levo for nearly a year.
Ah, I see. I'm not sure, but, I don't think that would affect your results. But symptoms of chronic pain and joint aches could be hypo symptoms. Do you have antibodies for Psoriatic Arthritis?
Your FT3 is very low for someone on 20 mcg T3. Do you take it on an empty stomach, etc. just like levo?
No. It is a sero negative arthropathy I am told, but I have quite a loss of range in movement and stiffness in my lumbar thoracic spine, pains where my tendon join my bones and psoriasis.
Yes I take it as a split 10mg dose twice a day. First thing at 630am before breakfast around 8am and then before bed a couple of hours after I eat my tea.
That is not a recommended way of taking T3. It is designed to be swallowed so that the stomach acid removes the sodium molecule the hormone is attached to.
Perhaps it's not recommended but it worked, everyday. Had abundant energy, was warm through the winter and my depression evaporated. The question for me has always been: Why did it stop working after 12 years? Never found a doctor who was curious or intrigued to dig into it. Consequently, I've gone downhill since 2005. Now, several doctors suspect central hypothyroidism but no one wants to take on the job of diagnosing or treating me, so I self treat.
What exactly stopped working? The T3 or the method of taking it? Why do they think you have Central Hypo after 12 years of treatment? These are very intriguing questions, but if you want answers, why not start your own thread? I'm sure plenty of people would love to get to grips with that.
I seemed no longer responsive to T3. It's only recently that a couple of doctors I go to have begun to suspect that it's central hypothyroid, based on years of continued weight gain, depression, poor sleep, sexual function problems. And, like you and others on here, the way to treat is to gradually keep increasing the dosage of T3 or NDT until symptoms begin to resolve.
I don't mind being my own doctor and ordering my own labs, but it would be much better to work with someone who understands. However, such doctors come with a big price tag, since they don't take insurance.
But, I wonder if they're confusing Central Hypo with Thyroid Hormone Resistance? The treatment for CH is not continually increasing T3 to high doses, that THR.
Central Hypo is when you have low TSH but also low Frees when undiagnosed. And, that is treated just the same as any other form of hypothyroidism.
It could be THR, but, again, unless one is seeing a doctor who knows what tests to order and has the knowledge to interpret the results, especially if it isn't clear, back to square one. I know of a few psychiatrists who specialize in thyroid and mood disorders. One is about 2.5 hours south of me. $600 for the initial consult and a 6 month waiting list. I'm on my own.
Do you have Ankylosing Spondylitis, tendon involvement (enthesitis) or both? I have Enthesitis and it stinks and for me personally I think my medication for my disease cause crazy lab numbers.
Do you have psoriasis or family history of psoriasis/PSA?
I have a life long history of mod/severe psoriasis with a very strong family history of psoriasis but no psoriatic arthritis and I believe that's because every darn doctor chalks every ache and pain to osteoarthritis or just getting old and PSA often gets overlooked but if you are being told you have PSA you should be getting treatment because PSA causes your bones to grind into pencil shaped tips over time, I'm told by my Psoriatic Arthritis specialist that your joints could eventually resemble a pencil point, how long does this take NO IDEA I'm sure this also depends on the severity of the disease and length of time left untreated.
My PSA according to my psa Rheumy was probably always present but because I was being treated for my skin it help the joints a bit UNTIL I had thyroidectomy and was taken off my skin meds (injection) and psa started to rear it's ugly head. I spent the past 3 yrs practically crippled and spent past year house bound because of psa flares..... this stuff is no joke.
I still think PSA and thyroid have a connection...it would probably take and army of little white coats to figure that out.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you did the test?
When were vitamin D, folate, B12 and ferritin last tested
They were last tested in June 2019 as I was convinced I had a problem. Results below ( hopefully). I have to say having thyroid issues and PsA means I have to pay a lot of money for private appointments and bloods .
Vitamin D too low, but GP only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
I don’t take any supplements currently . I was taking Vit D but have been sunshined up so thought it wasn’t needed currently.
I was wondering about supplementing B12 but was unsure what % through range was and whether it was worth discussing it with endo? Probably not from what you’ve said .
Thanks for the info. I tried gf ( didn’t see any improvement) and was tested for coeliac which was negative . What does soya do? Both my kids are dairy and soya intolerant .
Soya in food and supplements may stop levothyroxine working properly. If you regularly eat soya or take soya supplements your doctor might need to do extra blood tests to make sure you're getting enough levothyroxine.
Thanks SD. I have just ordered the Igenus Vit B tabs and Vit D K2 mouth spray. Any suggestions on timings of taking the supplements /meals/thyroid meds?
Is there a reason you don’t take the Vit B oral spray?
Personally I like Re-mag. (Developed by Carolyn Dean who wrote Magnesium Miracle) It doesn't seem to ever cause diarrhoea. But it's very expensive as import from USA (via Botanical Health) but it lasts a long time
Cheaper and easy to use is calm vitality magnesium powder. But start with small dose as too much can cause diarrhoea.....helpful if you tend to have constipation!
You magnesium looks low...my mother had just recently low magnesium and she had so many problems she been on magnesium tabs (doctor prescribed) she said she hasn't felt this good in a very long time....magnesium important.
Are you taking medication for PSA? Do you have psoriasis or family history of psoriasis? I lost my thyroid to cancer 3 yrs ago and my numbers have NEVER been good no matter my dose the doctors always think I'm hyper and recent bloods my tsh<.014 and the rest of my numbers were low as well at time of this blood test (I was on 2 grain of armour thyroid) currently on 88mcg synthyroid and 10mg cytomel and low and behold my pain has chilled out a lot Not Gone sadly.
Hi Batty1. I developed 2 small patches of psoriasis on my knees and arms earlier this year following a nasty viral throat infection. The back pain/stiffness I’ve had for years, early am stiffness lasting for over an hour, better with exercise, Achilles pain. Reynards symptoms.
Sorry just saw this post...weird. Anyway you sound classic for sure with PSA... Asprin is not going to prevent bone issues with PSA helps with stiffness ....Achilles tendonitis (enthesitis) YOU DONT WANT THIS TO TAKE HOLD oh my god you don't want this this tendonitis (Enthesitis) has taken me down it started in my ankle...currently have it in tendon of my knees and hips.
I inject Cosentyx, helps alot but not a cure...sadly.
I think I am a combination of stubborn and lucky as I’ve found a dr who actually values a clinical diagnosis and physical examination as much as a set of images/ results which I think is a rarity! We have decided currently I will stay on NSAIDs PRN and then look at other treatment is needed.
It is actually my knee and wrist and elbow which are worse and he said it’s the tendons . I feel like an old woman and I’m only 38! That and a combo of hypo symptoms 😩
Reading through is there a best time to take the Vit D spray? Taking Vit B after breakfast and all thyroid meds on a n empty stomach. Presuming I can’t drink anything for a while after the mouth spray?
Thinking about self sourcing additional T3, recommendations on dose increase?
You can take sprays whenever you like because they don't go into the stomach.
If you do buy your own T3, there's only one increase you can make, and that's 1/4 tablet. Any more would be too much. But, you can have another 1/4 tablet increase after two weeks, and continue like that until you feel well.
Well, I really wouldn't expect to get much joy from an endo. They know so little about thyroid. You could try taking your T3 all in one go - suits some people better - but I wouldn't reduce your levo if I were you.
Thank you, I wasn’t planning on reducing my levo. My recollection of the end of the conversation is that he recommended taking all the T3 at once for 8 weeks then see my GP is things aren’t better, only then consider reducing levo. I think he was trying to be helpful as I have to pay to see him privately.
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