Iv recently been diagnosed with an underactive thyroid and folic acid deficiency. Iv been on levothyroxine for 2 weeks now. Still really struggling with the symptoms. Iv been reading post to try and learn about this condition and I'm getting pretty confused. Does anyone have any hints and tips for symptoms? Also although I know my blood tests show I have an underactive thyroid but what questions should I be asking at my next appointment
Newly diagnosed and feeling overwhelmed - Thyroid UK
Newly diagnosed and feeling overwhelmed
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Mandy1311
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I recall asking the pharmacist, at three weeks, why I didn't feel any better. He explained that it takes time for the med to build up in the system (three weeks?) and then after that the damage has to be repaired. Or maybe not damage as such, but the body has been coping without enough hormone and needs to get back to normal, I guess.
So, don't panic that you're not feeling better yet - it takes time. Are you taking folic acid as well?
Buxon in reply to
Thank you. Initially, I was on 20 mg hydrocortisone daily which was reduced because I would go 2 days and nights without sleeping. I now have days when I am too tired to do anything. And days when I don't have a nap and stay awake until 4/5 am. Sometimes it's just too much on top of other medical conditions.
Mandy1311 in reply to
Yes. I'm on 50mg of levothyroxine and iv to take folic acid for 3 months
If your folate is low then it is usual for B12 to be low too - and taking folate before B12 can mask a B12 deficiency. Also Ferritin and VitD can be low when Hypo. All need to be optimal for your thyroid hormones to work well - yours and the ones you take. B12 is good at 500 - Folate and Ferritin mid-range and VitD 100 (UK )
Obtaining copies of your test results with ranges is a good habit to have - so you can monitor your own progress and check what has been missed 😊 Also makes posting here more helpful ! Check to see if your surgery has results on-line ...
Do you Hashimotos ?
The above website linked to this forum - will give you oodles of thyroid information. The book - The Thyroid and how to keep it healthy - by Dr Barry Durrant-Peatfield is a great read.
Make sure you have another test after 6/8 weeks and a dose adjustment ... post results here for advice ...
The dr hasn't mentioned hashimoto's. I get my bloods redone on 22nd sept. I will check if my results are available online if not I will ask receptionist. Thank you
They do not test both anti-bodies in the NHS. The TPO anti-bodies should be routinely tested. Your GP will say it makes no difference as treatment is the same. Well yes - but there are a host of things we can do to help ourselves which you can learn from this forum. 😊
I got a copy of my results. Still trying to work out how to read and understand them. Theres a bit that says
Thyroid antibodies
Thyroid peroxidase antibody level Abnormal
Thyroid peroxidase antibody is consistent with autoimmune thyroid disease. Auto antibody level do not correlate with disease activity therefore serial measurement is not clinically indicated
Does this mean anything?
Yes it means you have Hashimotos . Do you have results for B12 - Ferritin - VitD ? I suggested your B12 needs looking at if your Folate was low as they work together in the body.
Did you read the link I posted above to help you understand more. Also I suggested a book ... Hashimotos is the most common thyroid condition globally so read and learn as much as you can here as it is mostly self-help that brings results. Sadly GP's have little to offer. Have you been re-tested and had a dose increase ?
Read up the responses from SlowDragon to learn more about Hashimotos.
Thank you. Yes I looked on the link you suggested. Taking me abit of time to get my head round it all. These symptoms seem to be making it very difficult for me to take it all in and understand it. Which is out of character for me. Can I please ask Iv worked out that the treatment for the hypertension is the levothyroxine and that's it's important for me to help myself and the medication to steady my levels. What I'm having a bit of trouble understanding is as i appear to hashimoto's what does that mean for me? Is that 2 conditions I have to learn to live with or is it all 1? I'm really sorry if I'm not making sense. I'm not sure how to put my questions in my head into words.
Your blood pressure issues could resolve when you are well treated for your thyroid. Also the B12 - Ferritin - VitD results are needed - if low in range they could be affecting your hypertension.
The print out I got has a full history on it. I havent posted it because its 6 pages long and it doesnt have any references ranges on it. I found b12 says 531 ng/l I found folate level it says 2.7ug/l
I cant see ferritin or vitamin d anywhere on it
Hi Mandy
Welcome to the forum
So your high TPO antibodies confirms cause of your hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's. UK GP won't call it Hashimoto's, only call it autoimmune and most likely ignore the autoimmune aspect. But there's much we can do to help ourselves
Have you got other results yet from your test on Sept 22nd
GP should have tested TSH and FT4, ideally FT3 as well
Plus vitamin D, folate, B12 and ferritin
Low vitamin levels are extremely common at diagnosis. Getting vitamins optimal can help improve symptoms
Suggest you make a new post with thyroid test results.
You are likely to be ready for dose increase in Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
All that was tested on 22nd sept was tsh. The screen said the range was 0.2 - 2.4. At the start it said my levels were 16. On 23rd sept when I got results my levels were 6.5. They upped the 50mg of levothyroxine I was taking up to 75mg. I have it organised now that I will get a copy of every tests taken from now on. My dr didn't tell me what exactly he was testing for on 22nd he was testing for just that he was testing my thyroid levels. Should I be asking him what hes actually testing and can I ask for them to test all my levels? I feel like I'm trying to learn about my condition so I can help myself as much as I possibly can but the confusion, lack of concentration and extreme fatigue as making it very hard to do this so I do apologise if I come across as though I'm not listening. I am trying my best
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
See what GP has tested. And equally important what hasn't been tested yet
You can ask GP to test vitamin D, ferritin and B12 if not been done yet
Bloods should be retested 6-8 weeks after each dose increase in Levothyroxine
Frequently GP only tests TSH or TSH and FT4.....but it's important to test FT3 as well. Especially once we get near correct dose and TSH is under 2
All Levothyroxine (FT4) has to be converted in the body into FT3. With Hashimoto's we can be poor converters of FT4 to FT3. Getting vitamins optimal can help improve conversion
Brain fog is common and does improve!
My gp surgery doesnt have access to blood results online.
So ring up receptionist and say you would like to pop in the surgery in couple of days time to pick up printed copies of your recent blood test results.
You are legally entitled to these. You don't need to say why you want them.
It's always recommended to keep good record of your results. Make a note of what dose Levothyroxine you are on and how feeling etc
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. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
I have print outs of my test results. What do I do now?
Best to start a new post
Add results and ranges
Eg
TSH 3.5 (0.4 - 5.5)
FT4
FT3
Vitamin D
Folate
Ferritin
B12
Ideally Gp would test all these
Frequently they only test TSH
Plus say on new post what dose you were on at this test
Was it when on 50mcg
See you had dose increased to 75mcg
Bloods should be retested 6-8 weeks after each dose increase
Get print outs of the results of blood tests. Keep a diary of how you are feeling. This will let you see any patterns in symptoms. It can be reassuring too as you can look back and see improvement or realise that a symptom is not new. It takes 6 to 8 weeks for your hormone levels in your blood to stabilise on medication and after any change of dose. It may take longer than that for your body to catch up. So we need to go slowly with any changes.
Most folks do well on levothyroxine so assume you will too. Don't get scared by what you read on here. Most of us are the smaller percentage for whom levothyroxine doesn't work so we get deeper into the nitty-gritty.
As others have said it is a matter of patience and the more posts I read the more I think this is not explained to patients. From bitter experience I’d say the more hypo you are before treatment the longer it takes to get back on track. Because of the nature of the treatment your dosage has to be built up slowly in small increments every 6 weeks or so until you reach your optimum level (though sometimes then may be reduced slightly. Sleep definitely suffers and it is feels so weird that you can be sooo tired but unable to sleep.
Hang in in there and find distracting things to pass the time. I found jigsaws really helpful and soothing without being demanding. Don’t forget to tell your friends how you feel and that you may need support too even if it’s just company and tea and sympathy! All the best
What dose of levo are you on? If the doc (like many do) put you on a fairly low dose to start, you may have to ramp up after repeated tests until you feel better. In the meantime, keep this in mind: T4 (levothyroxine) is T3 (liothyronine) waiting to happen. If it turns out that your body chemistry cannot convert T4->T3 well, you may not ever feel well on T4-only. And if you have other conditions such as nutrient deficiency or gut damage, you can end up with various symptoms (such as anxiety) if T4 is piling up in your system without converting.
T4 has a half-life of about 1 week. So docs will require that you be on each dose 5-8 weeks, so you can reach a steady state before doing a re-test. If the doc isn't aggressive about increasing your dose, you can be on the increase-dose-then-retest cycle for many months.
I started on 50mg for 4 weeks the got levels tested last week and dose was put up to 75mg. I also have a folic acid deficiency so I have to take folic acid for 3 months too. Thank you for your reply. Starting to understand more about this condition as I knew nothing about hypothyroidism until bloods told me.
We all feel for you Mandy1311. I found out that my thyroid didn’t function at all when I was early 30s and remember feeling devastated and ill informed about the disease.
It took around 3 months to start feeling anything like my old self and even today I have some lingering symptoms.
My best advice would be to go on how you’re feeling rather than what your blood results say. My bloods always show that I’m slightly over medicated, but this is right for me personally.
Stop The Thyroid Madness is a good sight and there are others that can better help you understand the disease.
I take my medication at night and it works better for me. It’s just trial and error until you find your ‘sweet spot ‘.
Good luck x
Thank you. I feel absolutely rotten. It's the forgetting thing all the time. Extremely slow movement and thoughts. Tired. I'm soooo tired and my back aches when I have no option but to sleep. Thank you for suggesting tha website. I'll have a look
One thing to bear in mind...
One of the effects of hypothyroidism is that stomach acid levels reduce. The symptoms of low stomach acid and high stomach acid have a lot of overlap, although few people realise it. The main symptoms of both are indigestion, heartburn, wind and bloating.
If people take antacids or ranitidine (Zantac) or PPIs like omeprazole or lansoprazole when their stomach acid is already too low for good health they will end up making the effects of low stomach acid worse.
Having low stomach acid means that the stomach and gut can't break down food very well, so the body can't extract nutrients from food very well, and therefore nutrient levels reduce. Vitamin B12, folate, iron, ferritin, and vitamin D reduce in just about everyone with hypothyroidism.
Some of the symptoms you have now may reduce or disappear if you manage to get your basic nutrient levels tested (the ones I listed above) and optimise the results by supplementing. Having low thyroid hormone levels will be the cause of many of your symptoms - but it is important not to neglect the vitamins and minerals.
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