1) does anyone know why I could be hypothyroid if not hashimotos? Got diagnosed at 21 yrs old. Was completely healthy then overnight my thyroid stopped working. Put on 10 kilo in 3 weeks and was borderline comatose. TSR was over 100 if I recall correctly. Been on 100mcg Levo ever since. Dr said he didn’t know why. I didn’t have hashimotos, wasn’t genetic, no thyroiditis or pregnancy etc. Just curious if anyone else had similar experience.
2) has anyone tried guggul and ashwagandha? Felt ok on levo for c15 years but last few years been exhausted and dr told me had CFS but I suspect it’s conversion problem (and also deficient vit D). Will try to find endo who prescribes t3 as never tried but in meantime wondering if worth trying guggul and ashwagandha?
3) seems I have de quervains thyroiditis at the moment, been dragging on for months. Any tips for the pain other than ibuprofen?
Thyroid seems to be bane of my existence!
Thanks!
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Jts1
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Could you give full details of your Vitamin D deficiency? ie: date of blood test and results with ranges. Also what dose you were prescribed eg were you prescribed a loading dose and for how long.
If you haven't had the following tests then ask for these also:
Calcium; B12 & Folate; Ferritin
As you will need any deficiencies in these resolved with prescribed supplements and /or diet for your Levothyroxine to work well for you.
Did you have both the TPO (Thyroid Peroxidase ) and Tg (Thyroglobulin ) tested? Did you have an Ultrasound scan of your Thyroid & Parathyroids?
If you have your Thyroid Function blood tests results could you add them in to your post with dates & ranges, comments etc. Then people can make informed comment.
I know the weight increase is upsetting but try not to be too upset about that just now, best to concentrate on getting well first. If you already eat a healthy balanced diet with plenty of water - as you feel better (it takes a while) you may be able to "trim" it down to a healthy reducing diet.
Usually we don't start on any more than 50mcg of Levothyroxine. It is then increased gradually over time following retesting. So it should have taken 12 to 16 weeks to be on 100mcg I think.
About Ibuprofen - have you tried it combined with either Paracetamol OR Cocodamol? If you choose Cocodamol then you may wish to take Lactulose medicine at night or one or 2 glasses of orange juice (Tropicana with Extra juicy bits ) to prevent constipation.
Are you taking any other medication or supplements that might affect your Levothyroxine.
1) You could be hypothyroid for many reasons, Hashi's is the most common cause. Your thyroid could just fail, whiplash and trauma to the neck can cause it, apparently some medications can cause it (don't ask, I haven't looked into that ), pregnancy can trigger it, sometimes it can be iodine deficiency but conversely too much iodine can cause it, sometimes it's because there's a problem with the pituitary or hypothalamus.
2) Ashwagandah can lower cortisol so needs caution.
An article about a Guggul trial ncbi.nlm.nih.gov/pubmed/157... which, being independent, will probably be better than an article from the manufacturer of a Guggul supplement who hopes to sell it to the reader.
Have you got latest results for thyroid and vitamins and minerals? If so, it would help to post them, with their reference ranges, and members will comment.
I hadn't heard of " de quervains Thyroiditis " so just looked it up.
So it seems that after a bad virus infection or mumps, Thyroiditis then hyperthyroidism can develop; then this is followed by Hypothyroidism.
On the Thyroiditis NHS Web page it says to use aspirin or ibuprofen for the pain. If still painful then steroids may be prescribed. Have you been back to your GP about the pain? Sometimes we just have to keep going back until we get the care we need.
God Bless x
ps
I've just re- read your post and see that you have been on Levothyroxine for 15 years? Not sure if the diagnosis of de quervains is from 15 years ago or recent?
Thank you both for the answers! I was diagnosed hypo at 21, which was 17 years ago .. but just recently got de quervains.
Recent results eg one month ago
Tpo negative
Vitamin D 41.4nmol (70-150).
TSH 1.35 (0.3-4.2)
T4 16.4 (9-23).
Had two ultrasounds last week and no nodules but swollen etc. So thankfully they referring me to endo.
Problem is I was feeling like death last two years when thyroid levels were normal but de quervains can make hyper and hypo so think it’s best I deal with that first and then come back with proper panel of results once that is sorted to see if have vitamin deficiency etc.
About a year ago I was prescribed it as was super deficient. I took for six months and levels went to normal but I wasn’t great at taking pills after so went deficient again. This time dr just said to take supplement every day so am using a vit D and vit k spray under tongue as don’t seem to do well with pill supplements. Taking about 2000 iu per day to get up to normal relatively quickly. Will check bloods again in a month. Amazing what a difference vit D makes.
Ok thanks. Will up it a bit to 4000 then re test and yup, after last time have accepted will have to maintain as it fell off extremely quickly when I didn’t.
Most on Levothyroxine need TSH under one and FT4 towards top of range
Your results suggest you might need 25mcg dose increase
You could ask GP for trial increase
If you get one retesting in full 6-8 weeks after dose increase
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
You vitamin D is terrible. Needs improving to around 100nmol
Suggest you increase vitamin D supplements and then do full Thyroid and vitamin testing in 6-8 weeks
Thanks for this. Waiting for appt with endo as currently have de quervains (on top of being hypo for 20 years) and apparently it can make you hyper then hypo for few months so tricky to distinguish current blood tests from underlying hypo problem. But yes am working on vitamin D currently and then once de quervains eases up am going to do the full range of tests as the last two years (eg pre de quervains) have had extreme fatigue so the 100mcg levo probably not optimal.
But never been tested for t3 etc and these sites are so helpful. First time I was diagnosed with hypo took 4 months for Dr to test me as he told me I was just stressed and eating too much. When he finally tested he said I had the lowest thyroid he had ever seen! Sadly don’t have much faith in GPs in the UK. “You just stressed and depressed, try antidepressants “ seems to be their default response.
Personally I would suspect you have Hashimoto's rather than de quervain and it's a Hashimoto's flare or it's a thyroid nodule, or low vitamin levels are affecting thyroid
Have you had ultrasound on Thyroid? Push for one if not been done
10-20% of Hashimoto's patients never have tested positive for high antibodies
Possibly. Had two ultrasounds last week, waiting to see endo to go through results. (The jargon is beyond me). Will ask if possible to have hashi despite negative TPO (I avoid gluten generally for IBS so maybe that’s why TPO negative, who knows). Also my hypothyroidism came on super quickly when was 20. Thought hashis was more subtle.
However the pain did start few months ago when I started eating more iodine (itsu seaweed thingys) which apparently not great for hashi but thought maybe coincidence as also had chest infection and then super high ESR and high CRP and extreme pain in thyroid whereas thought hashi generally painless.. If the NHS endo isn’t helpful will try one of the ones on the thyroid UK list.
Between thyroid, fatigue and IBS, spend my life trying to figure out why and where my body is broken and refusing to behave! So frustrating.
Will let you know if get any great insights from endo!
Found low fodmap better than gluten free for IBS but low fodmap is pretty gluten free.
Seen so many mixed reviews on iodine for thyroid. Thought if I didn’t have hashi (as doctors said I didn’t) then maybe was hypo due to low iodine but think will focus on vit D first.
Ok. Will grill the endo re possibility of hashis and then if no answers, try the blood tests you suggested.
Yep. I avoid all of those. It’s more re understanding what fruit and veg can eat as apart from rice and oats on occasion don’t really eat carbs. For years would have “healthy” foods like apples and avocado etc not understanding why was dying in agony (to the extent I didn’t eat any fruit and veg for a while) but the lists are very helpful. Still suffer but a lot less. Found triphala (Ayurvedic medicine) helped IBS massively hence the qu re ashwagandha and guggul.
IBS started post becoming hypothyroid so hoping if sort thyroid and gut dysbiosis things will become more normal. Last year it would take me 7 hours to get up in the morning (would literally crawl from bed to sofa) despite “normal” thyroid tests. Def found cutting out gluten helped a lot.
If you've found Ayurveda helpful for other conditions, it might be worth trying to find an Ayurvedic practitioner rather than just self-medicating with single supplements.
I know! Have been self diagnosing for so long but completely agree. Just trying the endo route first as haven’t seen an endo in 20 years but will def try find a good doc as am becoming a bit of an Ayurvedic believer (thought it was all hocus pocus before).
I think I have it in my cabinet alongside 630 other supplements never got around to trying properly. Thank you!! will def try but for the moment, and for the first time in 15 years, low fodmap plus triphala plus magnesium oil plus coconut milk kefir/kimchi seems to be managing ibs symptoms more than anything else have ever tried.
.. no expert but I found healing the gut and the bacteria fundamental to me, as I read, you aren't what you eat but "what you digest" and that goes for vitamins too, I did same and bought b12 and D spray, the sun has kept d up for me this summer.
Other thing which pulls at health is Irma there is candida overgrowth. These three things influence general health and Dr Peatfield reports how it can i fringe on the whole endocrine system. I had to support adrenals a while as I didn't get any joy from thyroid meds until I'd done this, I know we all differ with what needs tweaking but if time maybe read up on gut health, Nutri do pretty good products as plenty others I expect
Lots of good wishes
J xxx
My hashi antibodies were over range and touch wood have remained in range since I've continued to be gluten free and low sugar (sugar is a big inflammatory source. Feeds candida for sure - there's a simple free saliva test for candida
Know,it sounds whacky but worth a read, all of it brings in more wellbeing.
lol I'm the worst as when I feel better I get complacent and just forget or run out vits, had 18 very up and down years before diagnosed
😊I Saw endo today, he cheered me up as said all my bloods in general were ok, - other organs, nice young guy but couldn't answer any of my questions
He even said ignore your tsh number as 5 is ok for some but I'm unsure about that 🙈(When I said other countries would take notice at 3 he just said it depends on the range ..... 🙈
Thanks Jeppy. I completely agree re sugar. Am good with no gluten but sugar is like crack cocaine for me. Every day try to quit to no avail. But I will persist!
Have read the gut health protocol book which is quite interesting (SIBO/candida/issues with MMC) and also Datis K books on thyroid and brain.
Throughout the years also been diagnosed with SIBO/Candida/adrenal fatigue/histamine intolerance/CFS etc etc.
It’s overwhelming trying to figure out what to do esp when GPs say it’s all in the head and stress related and these things don’t exist and levothyroxine is sufficient (don’t get me started on GPs).
This recent de quervains thing is messing up my plans slightly but so far have def noticed I see an improvement with the following...
- low fodmap, which is basically gluten free. Common sense clean eating.
- anti inflammatory things like turmeric
- fish oil, magnesium oil, triphala, ashwagandha, guggul, vitamin d
- natural probiotics (I don’t do well with pills).
I think what happened is I was on lots of antibiotics as a kid (bronchitis/asthma) which messed up my digestive system and maybe caused hypothyroid and then the side effects of severe hypothyroidism made gut dysbiosis worse. I blame my mother for all... she didn’t breast feed me lol and my immune system always been sh*t.
So def working on gut but think it’s vicious circle so want to check am getting proper conversion etc eg t3/low rt3 which should help gut and vice versa.
But there conclusion to my ramble is yes, I will try to cut out sugar.
Me too, I get sugar urges, I just cut out when on a good run, use the Sevilla or plant substitute. Which I hope is ok , has to be better, for years I rated honey and maple syrup, yum, and ate fruit by the bag, now of course it's a no go!! Think berries ok and esp blueberries but I either put substitute dash on, or heat them a min in micro, I think it's like pmt to me, I'm sure the hormones still do their cycle, what's left of them haha
Don't forget C is so good for inflammations, is selenium 200 any good for you
Just looked up quervians, poor you would cbd oil help maybe?? Xx
Not sure re cbd... will look into it but surviving on ibuprofen and codeine for the moment. Not ideal but hopefully pain nearly over!
Just tried guggul and ashwagandha a smidgen last few days, noticed a massive difference in heat/energy and brain clarity but feel like it could make me bit hyper/ and de quervains can make hyper too so will probably ease up on the guggul until de quervains calmer and I chat with endo. But felt difference on guggul and ashwangha within an hour. So will def re explore at some point and let you know!
When I had carpel tunnel, I used homeopathy and was amazed it went in a fortnight - a hairdryer blew up on me in a public place and the homeopath said it was caused by trauma
The other time was in pregnancy and extra fluid near medium nerve which went naturally
Apparently when the gland is swollen can release too much hormone making temporarily hyper then the destruction of the gland means can go hypo for a few months. Given my gland was already messed up for 20 years not sure how it will affect me. Fun times!
Ah ok you use T-convert? Do you rate it? Yes I think main ingredient of that is guggul. I have a pure guggul supplement from fushi. It says dosage is two caps daily of 450mg each but so far only taken one a day (three in total, over last four days) and def notice a difference. Just wasnt sure if it’s the guggul or de quervains tbh.
Can laugh now, the campsite owner when hairdryer blew was very reassuring and said I was fortunate as he had had a trip switch put in a fortnight earlier, (it seemed I had to be grateful ) 🙈😂
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), pregnancy can trigger it, sometimes it can be iodine deficiency but conversely too much iodine can cause it, sometimes it's because there's a problem with the pituitary or hypothalamus.
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