Thanks for your reply.
My endocrinologist called me yesterday and said they will not test for Vitamin D again until another 5 months' time. (6 months from last test).
Vitamin levels can take a while to respond to supplements. It probably is something you're going to have to nudge your doctor about. I'm not sure how long you should wait before retesting. You might post another question about that and ask if anyone else knows.
Thanks for your reply.
Doctor has not made any note to test me again for Vitamin D. I'm not sure how often they should be checking it or if it's something I've got to prompt them about.
It looks like you might have hit the jackpot with the folate. You never have to have ALL the symptoms to qualify. It looks to me like either trying to eat folate-rich foods or supplementing could definitely be worth a try.
Have you followed up on D since you started to supplement to make sure your level has gone up sufficiently?
Thanks for your reply.
Looking into folate deficiency people get these symptoms:
Loss of appetite
Weight loss
Additional signs are weakness, sore tongue, headaches, heart palpitations, irritability, and behavioral disorders
Out of these I have:
Loss of appetite
Weight loss
Weakness
Sore tongue but only after eating a lot of citric acid
Headaches
Some heart palpitations but not always
Irritability
As for behavioural disorders I have mood swings, not sure if this is the same.
Yes, I am supplementing Vitamin D with 3000IU.
The Hep2 result was found after the Hashi's.
Thanks
Just try to take what you can of your iron supplement. It's better to take a little less, but take it every day, than to take it off and on.
I'm not familiar with how the folate range works, but I know that with other vitamins, people often have symptoms of deficiency with low in-range results. If that's the case with folate, you might be more deficient than you think. You might research symptoms and see if you have any.
You can be deficient in B-12 without having pernicious anemia. Once we have one autoimmune disease, we're more likely to get a second. So, now that you know you have Hashi's, it might be worthwhile to check out a possible AI connection to your B-12 deficiency. You can to be tested for the marker for PA, which is "intrinsic factor". If you have PA, oral supplements will do you no good; you have to take injectable B-12.
Are you supplementing D?
Your doctors most likely felt that the Hep-2 result could have been due to Hashi's (or was that before you were diagnosed?).
Hi, yes, I'm supplementing iron with Spatone (liquid iron supplement). I can take up to 3 a day instead of me originally taking 1, but I have not taken it since because I tried taking 2 together after taking 1 a few hours before and it made me sick. So this has put me off.
Folate was not something my doctor suggested I supplement as she said it was only just out of range.
Is it likely I have perniciuous anaemia if my B12 is low? I thought there had to be other markers for this. Yes, I supplement B12 with 1000mg. This is oral.
Sorry, Vitamin D was tested. It was 43.6 (>75)
Doctor didn't say anything significant about the positive Hep-2 apart from it is present in autoimmune conditions but nothing to worry about.
Endocrinologist also mentioned it in her report but then added that I had no inflammatory markers.
Thanks
Jo
There is lots of information there, and I can't pretend to know a whole lot about most of it (although I see no huge, red flags), so I just want to focus on these:
Serum Ferritin - 21 ug/L (30-400)
Folate - 4.1 (4.6-18.7)
Vitamin B12 - 363 ng/L (180-900)
HEp2 - Positive Anti-Nuclear Antibodies (speckled)
Iron is essential both for the synthesis of thyroid hormones in the thyroid and for thyroid hormone's ability to get into cells. Yours is low, very low. Are you supplementing that?
While folate isn't one of the vitamins that relates specifically to thyroid, it's low, too.
In some parts of the world, B-12 range starts at 500 and goes to around 1200. Many people find it has to be near top of range. Pernicious anemia, the inability to absorb B-12 through the gut, is another autoimmune disease. Once we have one AI, we're more likely to get another. Are you supplementing B-12? Orally?
Once again, I'm no expert on ANA, but what did your doctor have to say about the positive Hep-2?
D wasn't tested?
Thanks for your reply.
Yes, I am eating gluten at the moment as I normally eat it as part of my diet, but I ate a lot of gluten even when I was given a week before the test. I don't know how I can double it or if there's a diet plan for preparation for celiac.
I can give you bloods from May 2013 excluding the thyroid panel, August 2013 includes ferritin, December 2013 excluding the thyroid panel and January 2014 of what was done in-clinic. Sorry if this will be a long post.
May 2013
Liver function test
* Serum Alkaline Phosphatase - 66 (30-130)
* Serum Total Protein - 8.20 g/dL (6.00-8.30)
* Serum Albumin - 44 g/L (35-50)
* Serum Bilirubin - 6 umol/L (<21)
* Serum ALT Level - 12 IU/L (5-40)
* Plasma Glucose Level - 4.6 mmol/L (<10.1)
Urea and Electrolytes
* Serum Potassium - 4.4 mmol/L (3.5-4.3)
* Serum Sodium - 141 mmol/L (133-146)
* Serum Creatinine - 66 umol/L (50-95)
* Serum Urea - 3.2 m/L/min/1.73 (2.5-7.8)
* GFR calculated abbreviated MDRD - 90 mL/min/1.73m*2
Full blood count
* Haemoglobin estimation - 153 g/L (120-150)
* Red blood cell (RBC) count - 5.33 (3.80-4.80)
* MCH - 28.7 pg (27-32)
* MCHC - 350 g/L (315-345)
* MCV - 82 fL (83-100)
* Total white cell count - 7.16 (4-10)
* Platelet count - 328 (150-400)
* Lymphocyte count - 2.13 (1-4)
* Basophil count - 0.02 (<0.11)
* Neutrophil count - 4.23 (1.50-7.50)
* Eosinophil count - 1.90 (<0.51)
* Haematocrit - 0.44 (0.37-0.45)
*Plasma Viscosity - 1.9 mPa.s (1.50-1.72)
August 2013
Full blood count (FBC)
* Total white cell count - 5.20 (4-10)
* Red blood cell count - 4.94 (3.80-4.80)
* Haemoglobin - 141 g/L (120-150)
* Haematocrit - 0.42 l/L (0.37-0.45)
* MCV - 85.8 f/L (83-100)
* MCHC - 333 g/L (315-345)
* Platelet count - 285 (150-400)
* Neutrophil count - 2.66 (1.50-7.50)
* Lymphocyte count - 1.85 (1-4)
* Monocyte count - 0.47 (0.20-1.00)
* Eosinophil count - 0.20 (75)
* Serum Ferritin - 21 ug/L (30-400)
* Folate - 4.1 (4.6-18.7)
* Vitamin B12 - 363 ng/L (180-900)
* Plasma Viscosity - 1.64 mPa.s (1.50-1.72)
* Glucose - 4.9 mmol/L (<10.1)
* HEp2 - Positive Anti-Nuclear Antibodies (speckled)
January 2014
Short Synacthen Test
* Basal cortisol - 622 nmol/L (385-635)
* 30 minute cortisol - 915 nmol/L
* 60 minute cortisol - 985 nmol/L
* Haemoglobin A1C - 33 mmol/L
* Testosterone - 0.7 nmol/L (0.2-1.7)
* Prolactin - 251 mIU/L (0-700)
* LH - 1.4 IU/L (follicular phase - 3.2-8.0, luteal phase - 2.4-7.2)
* FSH - 2.5 IU/L (1-9)
* Rheumatoid Factor - 9 IU/mL (90 mL/min/1.73m*2
Liver function test
* Bilirubin - 7 umol/L (<21)
* Alkaline Phospatase - 59 U/L (30-130)
* ALT - 9 U/L (5-40)
* Albumin - 45 g/L (35-50)
CRP
* C-reactive protein - <1 mg/L (<6)
Calcium group
* Calcium - 2.42 mmol/L (2.20-2.60)
* Calcium (adjusted) - 2.37 mmol/L (2.20-2.60)
Sorry, lot of info here.
Thanks
Jo xxx
Since money is a concern, I wouldn't bother with antibodies. Antibodies are useful only in terms of diagnosis. Once Hashi's is diagnosed, further antibody testing really doesn't add much useful information.
I'd recommend FT3, FT4 and TSH. It's important to see all three on the same blood draw.
Are you currently eating gluten? You don't want to stop that before the test, or it could return a false negative.
My next suggestion was going to be an iron panel, B-12 and D. Yes, please post.
No worries about the MRI. Sorry, I didn't give a date for it.
I could pay for labs again but the next time I do it may be the last for a long time due to me being unemployed. Would you recommend I get tested for just FT4 or FT3, or both along with TSH and antibodies?
Yes, I was tested for celiac once and that was negative. However, the doctor did not give me much time to prepare for the test (I think she gave me a week between the test ordering and the actual test itself) and my Endo is testing me again in a months' time - which I didn't know anything about until a copy of her report was posted to me.
I have labs for other things tested at the hospital in-clinic 2 weeks ago and other labs for things like ferritin, Vitamin D and Vitamin B12 if you'd like to see those.
Thanks
Jo xxx
Sorry, I was confused on the timing of the MRI. I thought that was recent.
Most of us who have Hashi's have mild (sometimes moderate to severe) inflammation in our thyroids most of the time until it is, in effect, "dead", and then it can begin to atrophy. Mild inflammation comes with the disease and with the antibodies.
Your symptoms are a bit of a combination of hypo and hyper symptoms. Hashi's can be characterized by swings from hypo to hyper, especially in early stages. However, mixed symptoms can also be caused by an imbalance of FT3 to FT4.
My first advice to you would be to either find a new doctor or try to educate this one. This doctor is just not doing proper testing. It is so important to know what FT3 is doing, but any doctor who doesn't test FT4 every time really doesn't have a good grasp of thyroid. Would you consider paying for labs again?
Another issue with Hashi's, especially in early stages, is that you are losing thyroid function all the time. The loss of function can be fast or slow, can be a fairly smooth slope or can plateau for periods of time followed by a drop off the cliff. So, meds adjustments have to keep up with all that, but at the same time, they can't exceed it. Without proper testing, it gets very difficult because so many symptoms can cross over and be symptoms of both hypo and hyper.
I notice you mention wheat and gluten. Have you been tested for celiac?
It would be really helpful to see current labs and be able to compare them to November's.
Hi,
MRI was done the same time as the ultrasound - 2 years ago.
Also the ultrasound report mentions "mildly enlarged thyroid" - so surely mildly enlarged means it still was inflamed or swollen?
* Depression
* Nausea
* Headaches
* Insomnia
* Fatigue
* Excessive daytime tiredness
* Hallucinations
* Constipation when eating wheat/flour/gluten products
* Joint pain/aches
* Difficulty swallowing
* Heavy/short/late/early/painful periods
* Short menstrual cycle, now every 21-25 days
* Tinnitus
* Dry, flaky skin
* Acne
* Hyperpigmentation on back and around eyes (in Endo's report)
* Difficulty gaining weight
* Intolerance to cold
* Cramps
* High blood pressure
* Low heart rate
My symptoms have increased and are trending more hypo.
Back in November I felt a bit better than I do now.
Thanks
Jo xxx
I'm not an U/S expert, by any means, but I think increased vascularity is only an indication of cancer if it is associated with a nodule. Your report doesn't indicate any nodules. The fenestration is in the sublingual glands, not the thyroid, and is considered a "normal anatomical variant". I think a periodic U/S is a good idea, but I don't see anything in the report that should have worried you two years ago. If you've recently had an MRI of the neck, an U/S might be redundant?
Ooooh, your doctor left out a small, "minor" detail, didn't he?
So, your doctor orders TSH w/reflex to FT4, which means he is basing all his decisions on TSH. That's usually a recipe for keeping you sick. FT3 and FT4 are the actual thyroid hormones, and meds adjustments should never be made without testing them as well. Your one FT3 in November was 65% of range, which looks like you convert well.
If you don't mind, yes, give me a list. Also, have your symptoms consistently stayed the same, or have they been trending more hypo or less hypo? How did you feel back in November before your meds were increased again?
Hi, symptoms are:
* Depression
* Nausea
* Headaches
* Insomnia
* Fatigue
* Excessive daytime tiredness
* Hallucinations
* Constipation when eating wheat/flour/gluten products
* Joint pain/aches
* Difficulty swallowing
* Heavy/short/late/early/painful periods
* Short menstrual cycle, now every 21-25 days
* Tinnitus
* Dry, flaky skin
* Acne
* Hyperpigmentation on back and around eyes (in Endo's report)
* Difficulty gaining weight
Jo xxx
Thanks for your reply.
Well, someone told me that words like "fenestration" and "thyroid vascularity" meant cancer. Is that not the case?
I wasn't diagnosed with Hashi's in Jan 2013 because my doctor did not tell me about it.
The labwork is inconsistent because FT4 is only done if the TSH is not within normal range. The FT3 result was done privately and I had to pay for it.
Would you like a list of my symptoms? There are lots of them.
Jo xxx
I don't really see anything of concern in your U/S report. What's bothering you about it?
Why weren't you diagnosed with Hashi's in 1/2013, when your TPOab was 84,000? That doesn't sound quite the way I meant it...did your doctor miss that, or not tell you about it?
Unfortunately, your labwork is pretty inconsistent: Sometimes, it just has TSH, sometimes FT4 and TSH, rarely FT3, FT4 and TSH. It also looks like your doctor is basing his meds changes on TSH.
How do you feel?