I’m feeling a bit frustrated and lost at the moment. Last year I had a really big set back with symptoms of tingling throughout body, goose bumps randomly down one side of my legs, severe headaches, pain, fatigue, feeling jittery, palpitations, dry hair and thinning out - list goes on. I lost a lot of weight and over the past month have been putting bits back on. I’ve noticed that the tingling sensations have pretty much gone now, but the jittery sensations and palpitations are getting bad again.
The last time I went to the endocrinologist my FT4 was 13 (10-20), FT3 was 4.4 (2.8 - 6.8) and TSH was 3.0 (0.4 - 4). My TPO antibodies were 736 (<60). My endocrinologist said that whatever was going on didn’t seem to be my thryoid and recommended I go antidepressants for anxiety, despite my thyroid ultrasound mentioning suspected thyroiditis.
My Vitamin A, Zinc and Vitamin D were low at the time, but B12 was apparently normal at 316.
Today, I went back to the endocrinologist for a check in and still said we will just wait and see. My fatigue has become that way that I can sleep 9 hours at night and still need to rest within a few hours of waking in the morning. My bloods this morning at this appt were: Vitamin D 89 (>49), Iron 14 (10-33), Ferritin 133 (20 - 290), Zinc 15 (10-25), Vitamin A 1.9 (1.6-2.3), TSH 1.9 (0.4 - 4), FT4 14 (10-20), FT3 4.7 (2.8-6.8) with TPO now 3100 (<60) and Thyroglobulin 420 (<60). Again, I’ve been basically told to wait and probably don’t need repeat tests for another year. I’m not sure what any of this means as the Dr was talking more about making sure I practice remedies for stress; even though I don’t particularly feel that stressed. Sorry for the long post, but I’m confused and feel now like the Dr thinks I’m making it all up. Is this Hashimotos and if so, are there any steps I can do naturally in the meantime? Perhaps its something else.
Written by
Jb78
To view profiles and participate in discussions please or .
Perhaps someone more experienced could comment further on your thyroid, but to me your levels seem not too bad, although TSH ideally should be nearer 1, or a little lower. You definitely have Hashimoto's. You don't say how much Levo you are taking. Also did you have your folate levels checked? low levels of folate can produce tingling.
When you have one autoimmune disease it is not unknown to develop another. I was in a similar position about 4 years ago, had been doing okay and suddenly everything went haywire. Antibodies rose and I had tingling and numbness in toes, headache and a few others, my B12 was 365 so endo dismissed B12 deficiency and also suggested antidepressants which I did not accept. I then had a private full blood count which showed over range MCV (mean corpuscular volume) which is indicative of pernicious anemia. So even though my B12 serum levels were within the normal range it doesn't rule out deficiency. If you could get folate and MCV checked that might go some way to ruling in/out the possibility of a deficiency.
I have/have had the same symptoms minus weight loss and goose bumps all my results have come back in the normal range . I was told I have thyroiditis and my endo has suggested going back to gp for further tests for something else and also medication for anxiety and panic as i can’t blame how I feel on my thyroid (I have never experienced tris before)!.
I have taken advice from this forum that my tsh needs to be closer to 1-2 and when I look back at my results when I felt myself my tsh was at 1.6. Saying this I do not know how to get my tsh to this point!! Are you on any thyroid meds?
Sorry I’m not much help but just wanted to share that I have been through similar to you 😊
I'm afraid you are yet another in a long line of victims of endos who are very likely diabetes specialists (most are) who know little to nothing about treating Hypothyroidism.
First of all
My TPO antibodies were 736 (<60).
TPO now 3100 (<60) and Thyroglobulin 420 (<60).
How come your endo doesn't appear to know that raised antibodies confirm autoimmune thyroiditis aka Hashimoto's. Yes, you suspected that and you are right. Your ultrasound mentioned suspected thyroiditis so what's the matter with your endo!!!
So you need to read, learn and help yourself regarding Hashi's because you wont get help from your endo.
Hashi's is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. You can have hypo symptoms and hyper-type symptoms and can swing between them - these are called Hash's Flares and are caused by the antibody attacks.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Absorption problems need to be addressed so that nutrients can be absorbed. When nutrient levels are optimal then thyroid hormone can work properly. Optimal levels are:
Vit D - 100-150nmol/L according to the Vit D Council
B12 - very top of the range
Folate - at least half way through it's range
Ferritin - minimum of 70, recommended half way through range or around 100-130 for females
(Doctors wont agree, they're not taught nutrition so as far as they're concerned anywhere within the range seems to be OK.)
Please see the reply by SlowDragon near the bottom of this thread for links and information how to help here healthunlocked.com/thyroidu...
**
My endocrinologist said that whatever was going on didn’t seem to be my thryoid and recommended I go antidepressants for anxiety
No, he's wrong. It is to do with your thyroid. Address the Hashi's, know how to adjust meds during the Flares, address the gut/absorption problems. That's what you need. Oh, and an endo who understands autoimmune thyroiditis (Hashi's).
If you wish to continue seeing an endo then email Dionne at tukadmin@thyroiduk.org for the list of thyroid friendly endos, see who you can get to and ask for feedback on the forum. Your present endo wont be able to help you, he simply doesn't undersand. It might be an idea to discuss this with your GP, if your GP understands Hashi's then really there's no need to be under an endo unless your test results show poor conversion and you need T3 prescribed.
**
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. When your results are at this level, if your FT3 and FT4 are in balance in the upper part of the range then you convert well enough. If your FT4 is high and your FT3 low then conversion is poor and the additon of T3 to Levo is indicated.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood
But having said that your endocrinologist seems particularly useless not to recognise Hashimoto's staring him in the face
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Don't know what to do anymore
Don't know what else to do..!
Dissapointed & don't know what to do!
BIT CONFUSED AND WHAT TO DO?
