Would any of you knowledgeable people be able to look at my test results please? I usually hang out in the Lupus forum as that’s what I was originally diagnosed with. However, the treatment is not helping (hydroxycloroquine and steroids) and Dr Google led me to make a possible thyroid connection. So I had these tests done.
I have problems with my hand , inflammation, pins and needles, loss of grip; fatigue, cold sensitivity, constipation, abdominal pain, - to list but a few. Also have low white blood cells and platelets.
Am I right in thinking this looks more like Hashimotos? Hand problem carpal tunnel? I am also gluten intolerant (celiac test negative) and dairy intolerant and have followed a diet that excludes these for past 6 months which def makes me feel a bit better.
Not sure where to go with this - back to rheumy or to GP?
Any info gratefully received. Thanks.
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SashaT64
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Hi, I’m just getting started on understanding thyroid issues this past year, but it looks like you definitely have a thyroid issue with all those antibodies. Are you seeing an endo? That would be my first call.
I'd reply slightly different to others here by stating you have an autoimmunity problem (but you knew that if on lupus forum). Its just manifesting in the thyroid now. You can try to address it by natural means or altrrnatively deal with the symptoms for each manifestation via traditional medicine. Its your call.
Pins and needles and loss of grip could be exacerbated / caused by low b12 and vitamin d due to leaky gut (you mention being dairy / gluten sensitive) which goes with the territory of hypothyroidism and autoimmunity. Can also occur in Rheumatoid arthritis and Sjogren's Syndrome (the main symptom of the latter is dry mucous membranes - saliva, tears etc) which often coexist with other autoimmune illnesses like Hashimoto's. For some reason, multiple diagnoses are not generally sought once you've been found to have just one. This is a mistake as autoimmune illnesses hunt in packs.
As Lora7again say.s, your free T4 and free T3 are too low - but if you are not currently on thyroid medication, you are most unlikely to get treatment until your TSH goes out of range - probably need it waaaay out of range.
Doctors are TSH-obsessed and seldom test T3. In most countries your TSH needs to go over 3 for treatment (which is where you are) but for some unexplained slightly sadistic reason, in the UK they want you really ill first, and often won't treat until it reaches 10.
Your other health issues and high antibodies may help you get treatment before it gets that bad, but the GP will still almost certainly want your TSH out of range first. And s/he may not accept private blood tests.
If you arrange a TSH test with your GP, make sure it's fasting and as early as possible in the morning - that will give you the highest TSH reading of the day, which is super-important for you as you may be over-range first thing but not later on. As soon as it's out of range, try and get a trial of levo - even a baby-dose of 25 mcg if you can - as it's easier to get an existing dose increased than to start getting treated.
Thanks all for the great advise. The treatment I’m on is obviously not helping me , and most likely now the wrong treatment. I will start pushing for NHS thyroid tests and hopefully get the ball rolling in the right direction. I just feel stuck at the moment - my rheumy just keeps telling me to keep taking the pills ......
I’m not a doctor...but I would keep on taking them for now. It’s not at all unusual to have lupus and thyroid autoimmune disease. I take meds for both. Yes...sometimes it’s hard to work out which disease is causing which problem... but rheumy wouldn’t have diagnosed lupus without real evidence. Do you know what bloods were showing when tested for that?
Complement levels c3 and c4 low along with low neutrophils and platelets. Was ANA negative so on the face of of not a definitive lupus diagnosis but verbally that’s what rheumy said it is.....
Hi Sasha. Low compliment proteins C3 and C4 only mean that you might have an autoimmune disease. In your case you definitively have one based on your slightly elevated TPO-ab, Hashimoto's. Deficient or low C3 and C4 are not specific to any particular autoimmune disease. Being low or deficient in C3 and/or C4 does not mean that you definitely have Lupus. Specific criteria is met to diagnose Lupus and other autoimmune diseases. I see that you take hydroxycloroquine and steroids. Are these medications helping with your Lupus symptoms?s
I read in your first post when you were wondering if you had Lupus 8 months ago that you already had an autoimmune disease at the time. Do you mind me asking what other autoimmune disease you have?
I also have Hashimoto's. As for my compliment proteins, I am deficient (below range) in C3 and low in C4. . I do not have Lupus. Like you, I also have a negative ANA. I am negative for RA, Sjogren's, etc.
I didn’t tick all the boxes on that Lupus checklist but a fair few . Officially they say Undifferentiated Connective Tissue Disorder but verbally they say it’s lupus....
I have my doubts as the lupus meds are doing nothing for me 8 month in, hence the googling leading me to thyroid and getting these tests done for my own curiosity more than anything else.
I will now have to go back to the rheumy and see what happens next. Thanks to everyone here I am now a lot better informed 🤗
Hi SashaT64. If the medication is not helping your symptoms, I’d have to wonder, too. Are your symptoms mainly in your one hand, and I believe you said to a lesser degree in your other hand and a foot? Is it your dominant hand and any possibility sports and lifestyle could have caused the symptoms? Autoimmune diseases that destroy joints radiograph differently than osteoarthritis and x-rays are used in determining diagnosis. Did the doctor rule out osteoarthritis by x-raying your effected joints?
It’s mostly my left non dominant hand and to a much lesser degree the right and also some inflammation in toes on right foot. They xrayed and mri my hands right at start and didn’t see anything - so ruled out osteoarthritis.
Rest and use make little difference to symptoms which is strange. Come and go of own free will and can see no pattern to it. But are mostly present.
In addition to the good advice you’ve already been given, I’d add that as well as low B12 possibly causing the pins and needles etc, I’d also request to get your folate tested. When my folic acid is low I get low platelets and it is one of the side effects of low folic acid.
Having one autoimmune disease makes others more likely
Hashimoto’s and Lupus seem closely connected. Sometimes Hashimoto’s is initially misdiagnosed as lupus
What vitamin supplements are you currently taking?
Low B12, folate, ferritin and vitamin D are all extremely common with Hashimoto’s
As you are on strictly gluten free diet...are you supplementing magnesium?
GF diet very low in magnesium
Vitamin D needs good magnesium
Your thyroid results to suggest Hashimoto’s. But you are unlikely to get any medic to agree.......yet
TSH needs to be above 4.2
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
Have been on hydroxycloroquine for 8months. They say can take 3 months to get into your system. It has had no affect on me at all, no change in symptoms. It is frustrating to just keep being told to take it . Prednisone was supposed to help. Made me feel worse- but did uplift my neutrophil count a bit. At last consultation they did concede that diagnosis may be off but just to continue for another 3 months .......
No J didn’t know that about B vits and biotin. Will remember for next time - thank you.
I did not test before starting- I have a bit more energy and a bit less tired now. B12 is just now in mid range and D on low side of normal range still. I will recheck them as have to have the folate redone, so have got a free test!
Gluten free and diary free are a big help. Diary makes me nauseous and gives me diarrhoea. Gluten makes me bloated, causes cramping, wind and other bowel issues at the very least.
You may assume that a lot of your symptoms are Lupus, and I am not an expert on that at all. However, when you mention connective tissue problems that triggers a red flag... There are some rarer vascular varieties of Ehlers Danlos Syndrome, I believe, that include some elements of mast cell dysfunction as well as neutropenia and platelet disorders. Ehler's Danlos can also occur alongside Hashi's. You may have lots of dental issues? It'd be worth asking for a second opinion - problem is that it's a syndrome that spans different medical disciplines.
I have an underactive thyroid and have been on levothyroxine for 2 years now. I have also tested ANA positive and RA is positive too.
I also have trouble with my hands and joints which they have put down to OA. My main problem has always been fatigue and muscle twitches, which is why I ended up at the doctors years ago. Does anyone else with underactive thyroid have muscle twitches as their main problem? X
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