I was diagnosed with Hypothyroidism last week after a TSH of 31mu/l (normal range 0.27 - 4) and Free TA was 9.7 pmol/L (12 - 22 normal). I had a whole host of symptoms that led me to this, with the help of a monitor my health test which eventually encouraged the GP to perform some routine blood tests. My results 2 weeks before that were significantly lower (still raised TSH and low T4). At the time symptoms were dizziness, tiredness, always cold, skin changes, depression, knee stiffness and by the time I was diagnosesd, a puffy face and fluid retention.
I started 50mg Levothyroxine 1 week ago. No symptoms subsided but not expecting them too for a few weeks at the least.
About 1 month ago, before diagnosis I was concerned by some symptoms I had which were tingling/crawling/burning sensations in my skin. I felt sensitive to even the slightest touch of heat (felt like my skin was burning just from standing near an oven door). Around about the same time, I started to get eye floaters which I had never had before, jaw pain and I can't wear contact lenses without pain and discomfort (optician says I am fine).
These symptoms subsided by the time I got my diagnosis, but yesterday they came back with a vengeance. I have tingling/crawling/burning sensations on my face, lips, arms, legs, all sorts of random places if you get my drift! Last night was the first time in a while I struggled to sleep and felt uncomfortably hot compared to my usual cold hypo-self. I have also been urinating far more frequently, despite a lower than usual water intake. Eye floaters are still a problem, though mostly when using a screen/bright lights. Vision seems to be slightly more blurry than usual. Skin is also itchy!
My question, has anyone experience this as a symptom of Hypo and it has come and gone? Possible levo reaction? Another cause? Any help is appreciated, to point myself in the right direction with the GP! Before all of this, I was a fit, active 27 year old female and now I feel I have all sorts of weird body reactions!
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Kirstyrc
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Thanks for the reply SlowDragon. I have answered your questions/made comments below.
Which brand of levothyroxine have you started on - Mercury Pharma I believe? The box looks fairly generic, that's the only distinguishing thing I can see.
Are you taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after - Yes! I take it as soon as I wake, no food or coffee for 1 hour minimum and I avoid all dairy for 4 hours to prevent calcium getting in the way.
Has GP tested vitamin D, folate, B12 and ferritin levels yet - Vitamin D was not tested by GP, monitor my health test shows 73 nmol. GP results were - B12 was 567 ng/l, ferritin was 76 ug/l, folate was 4.45 ug/l (normal range starts at 3.89). I previously had a 2.6ug/l from Monitor my health, which was on 4th April. GP bloods were on 18th April. I struggle to get folate in my diet, due to a GF diet which limits my folic acid intake.
Also have you had thyroid antibodies tested yet to see if cause of your hyperthyroidism is autoimmune thyroid disease - Nope, according to my GP I have not met the "clinical guidelines" for investigation into why this has occurred and it can "just happen". I have ordered a monitor my health TPO antibody test.
It typically takes 6-8 weeks for each dose levothyroxine to settle - they are re-testing me 4 weeks after starting.
Bloods should be retested then.
Likely to need increase in levothyroxine after next test
Book test early morning, ideally just before 9am and last dose levothyroxine 24 hours before test - thanks for this advice, that is good to know especially as this will be my first follow up test! My initial test for diagnosis was done at 4.30pm in the evening. Are thyroid hormones most accurate in the AM?
Symptoms of hypothyroidism
Fortunately we don’t get ALL these symptoms - that's good to know, although ticking quite a few at this rate!
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Hi SlowDragon - hope you don't mind me coming back to this post. My Thorne Basic B has arrived and I am excited to start taking it. My b12 was over 500 ng/l (normal range is up to 700) so I believe that should stay optimal with the amount of b12 in the supplement. My question is, is the amount of folate in it ample to increase low levels of folate that are not yet deficient (4.45u/g - normal range is 3.89u/g to 99999 with my lab results)? I am attempting to push my GP on re-testing folate following a return of few folate deficiency symptoms. Just pre-empting in case they refuse and I have to ensure I am supplementing myself!
If GP is going to test folate don’t start taking vitamin B complex until after testing
Yes it will improve folate
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free. But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg Mercury Pharma to add to 50mcg
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Thanks for all comments and support - have noted all and will revert back to these comments regularly to make sure I am doing all the right things! Have now purchased the recommended B supplement - useful to know re absorption issues with folic acid.
I didn't know multi-vits were recommended against. I have been taking them everyday since my diagnosis, thinking I would benefit but now I can see they contain Iodine, evidently less really is more! From your experience on this platform, could the additional iodine in the supplement have sent my body or thyroid into a bit of a frenzy?
I have had a celiac test recently (GP advised to do one on Monday and got me in on Tuesday). This was pointless as I haven't intentionally had gluten in 3 years and they recommend a 6 week gluten full period! Through elimination, I worked out gluten was the root cause of my tummy misery through my teens and early 20's. Weirdly since my boyfriend accidentally put wheat in our dinner, all of these symptoms started and now I am here as Hypothyroid. Perhaps it brought to light an issue I never knew I had.
Also interesting to note the antibody info. I will do the TPO test I bought from monitor my health and see what that shows. Getting my GP to do blood tests was enough of a chore it felt, not sure how they will respond to me requesting an ultrasound. May need to push for private on this! I am going to stop the multivitamin and see how my body responds over the coming week before my appt. I have sent myself into a right frenzy worrying I have MS!
Welcome to the forum. Have you found the Thyroid UK website? There is a list of hypothyroid symptoms at this page. It lets you download a tick box version so that you can tick the ones that affect you. More things than you realise can be affected by thyroid problems.
Thanks, I think this is a great place to be for someone newly diagnosed, already received a wealth of information from people. I have, I actually printed it off and ticked off what I was experiencing. Took it to my GP who didn't even look! It is such a mind boggling, all-encompassing condition.
A couple of common problems associated with hypothyroidism...
1) Any tissues which produce moisture e.g. tears, can dry up. Your contact lens problems are probably caused by this. Possibly your floaters are too, but I'm not so sure about that.
2) Another "drying up" problem is that hypothyroid people end up with low levels of stomach acid. This can lead to poorly digested food in the gut and reduced absorption of nutrients from food. This is why so many of us end up taking so many supplements we rattle.
The main nutrients referred to on the forum are Vitamin B12, folate, vitamin D, and ferritin (iron stores).
Many of us concentrate on the above four nutrients, but others that crop up on posts on the forum are low levels of zinc, selenium, magnesium, various B vitamins in addition to B12 and folate, vitamin C, vitamin K2, vitamin A, and possibly a few more minerals.
Please note that doctors think any test for a nutrient which returns a result which is in range is "fine". But the way people feel with a ferritin level of 30, compared to 100, (for example), is huge. Optimal is best. Bottom of range is not a good level for anything. And please note that optimal varies depending on which nutrient is being discussed. For example, a B12 level which is top of the range is "fine" but this isn't true for ferritin.
Thanks Humanbean - some great info there! I have absolutely seen a reduction in eye moisture and I have already been advised that eye drops will be my best friend for life now. I even notice far less tear production when I yawn now. Unfortunately, my optom has advised that Levo causes dry eyes, so not sure a return to contact lenses is likely!
I have since bought a complex b vitamin, folic acid, vitamin D, a multivitamin, as well as Vitaminc C & Zinc, magnesium and selenium. Interesting about K2, perhaps I need to invest in the Vit D and K2 spray instead? Heard alright things.
2) Another "drying up" problem is that hypothyroid people end up with low levels of stomach acid. This can lead to poorly digested food in the gut and reduced absorption of nutrients from food. This is why so many of us end up taking so many supplements we rattle.
Vitamin A is an interesting one, I understand it to be dangerous to have too much so I am concerned about adding an additional Vit A supplement on top of a multivit which provides 100% of the rda?
I am certain my folate is an issue, previously tested at 2.6ug/l then 4.45 later, which is right at the bottom of the range. I noticed these symptoms before, coincidentally when my folate was at the 2.6 end. I have another gp appointment to discuss these symptoms and will try and push for another look at folate. From my interpretation, the MCV and MCH was tipping on the edge of above normal, so wondering if I am at risk of folate deficiency anaemia, seems common in Hypo.
Is Ferritin linked to iron? my last test for that was 76.
Please ensure that any lotions, potions, sprays. gels and drops you may use to ease your eye dryness are all Preservative Free - even those that maybe prescribed by the NHS.
There are gunkier, more heavy duty tubes of greasy options to use overnight -
you may even have trouble seeing clearly your dreams !!
but your eyes will be more comfortable in the morning.
Unfortunately, my optom has advised that Levo causes dry eyes, so not sure a return to contact lenses is likely!
Actually, I think your optometrist is wrong. I don't think it is Levo that causes dry eyes it is more likely to be the hypothyroidism that causes the issue.
Your eye dryness may reduce when your dose of thyroid hormones is optimal for you.
Vitamin A is an interesting one, I understand it to be dangerous to have too much so I am concerned about adding an additional Vit A supplement on top of a multivit which provides 100% of the rda?
I have some vitamin A tablets/capsules that I take, but I only take 1 per day on two separate days a week. I am conscious of the problem of overdosing on fat-soluble vitamins (Vitamins A, D, E, K), and am cautious about taking them.
A few years ago, after I had started thyroid treatment, the palms of my hands and the soles of my feet were a pronounced orange colour, and this had been true for as long as I could remember. I bought a bottle of "real" vitamin A i.e. not beta carotene. I finished the bottle and the orange colour disappeared. It has never come back.
I think the thyroid hormones may have improved my conversion of beta carotene to vitamin A. But I still top up with a couple of doses of a supplement of real vitamin A twice a week. I have no evidence that this is causing me any health problems.
Yes I have had something similar - not quite a pronounced orange colour but yellow of the soles of my feet and hands and some yellowing around my eyes too. Will research more into this first, but can't see once or twice a week doing much harm. I have so many things to start supplementing gradually, I will have to prioritise.
In addition to the comment by humanbean it is important to realise that a lot of so-called vitamin A isn't vitamin A.
Many vitamin products and nutritional claims indicate a vitamin A content when the product actually contains beta-carotene.
Our bodies need to convert beta-carotene into vitamin A. Basically each molecule of beta-carotene gets split in two.
When hypothyroid, that conversion can be impaired.
Or we need to take "real" vitamin A - often called "pre-formed".
We can consume almost any amount of beta-carotene and the worst we are likely to get is orange skin! Indeed, that orange skin can be a pointer that we are not converting beta-carotene into vitamin A. (It isn't sufficient to positively identify the issue - it just adds to the evidence.) But if we consume too much pre-formed vitamin A, we can suffer a lot.
A great thyroid doctor, the late Dr Skinner reported that eye floaters were common in hypothyroidism. It's possible that your thyroid is deteriorating rapidly and so your 50 mcg dose is already inadequate. As you are young you could ask your doctor if you could have your dose increased to 100 mcg now. It is not uncommon to start non-elderly patients on 100 mcg. This is amore recent approach. If your doctor is uncomfortable doing this just stick with it for another month or so until they are happy to increase your dose.
That is interesting to hear - perhaps not a coincidence then! I anticipated that as a potential, given the 4x increase in my TSH in a 2 week period (from 7 to 31). I have another test in 3 weeks and a GP appointment next week, let's see what they say! I understand most people do increase from starting dose and end up on 100+
I am pretty new to this too.( Oct.) I was gluten free for a year before that. I was a lot better by Christmas. (Gluten intolerant not celiac)There such kind wise people on here.
1. You seem to be ok on T4, no bad reactions. This is very good.
2. Blood test at 4 weeks is Brill. The TSH and T4 will have mostly moved by then and guide any dose increase. 6 to 8 weeks later when dose is being refined.
3. Biotin messes up thyroid tests. It's in vit B complex. Stop biotin a couple of days before testing.
4 Levo/T4 is slow and your body is also slowly revving back up. Be kind to yourself while you mend.
5. Keeping a diary /log of symptoms was useful for me. Also listing what and when things are needed. I did weekly morning temperature, heart rate and blood pressure, weight and symptoms. Doctor should dose you on symptoms not blood
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