I was diagnosed Hypothyroid 5 years ago after my first child, I am 38. I subsequently found out whilst pregnant with my second child that I had extremely high TP antibodies and therefore have Hashimoto’s. This was an accident, my midwife ordered the wrong test at the time. I had never known otherwise.
I’ve been on Levothyroxine for 5 years, started with 100mcg, down to 75mcg.
When I was first diagnosed, I had severe exhaustion and my heart was skipping beats a thousand times a day. Once I started Levothyroxine, all of this disappeared and I led a normal life.
Unfortunately, like everyone, that was very much short lived. The extreme exhaustion has returned and I’m experiencing constant skipped heart beats as well as palpitations. I’m so exhausted that I cannot even get out of bed in the morning. I have 2 young children and I’m sad that I can’t play with them much. I can’t even work. The tiredness is utterly debilitating.
My GP keeps ordering me tests that come back normal. I’m constantly being told there’s nothing wrong, that perhaps it’s my mental health. It so isn’t.
I haven’t been able to convince my GP for a referral to an Endo.
I just don’t know what to do anymore.
I’m also experiencing some eye issues, puffiness under my eyes and gritty like feeling. My eyes feel extremely heavy, as if there’s a weight underneath them. I’m now wondering if perhaps I have Thyroid Eye Disease amongst other things but my GP doesn’t see any issue.
I’m 38, but I feel like I’m 80. I have such a low quality of life. I don’t know what to do, where to begin. It’s all so overwhelming, so many books to read, so many different ‘diets’, ‘protocols’, supplements, lifestyle changes. I am lost
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Dissydee
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
When doctors tell us our results are 'normal' they really are only saying that they are within average and as thyoid patients we need them OPTIMAL. There's a big difference and GPs have no clue. This goes for both thyroid & vitamin results.
Its highly likely you need a little more Levo and/or some added T3 plus getting vitamin results to normal.
First step would be to get GP to run vitamin tests for ferritin, folate, B12 & D3. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
So you know you have Hashimoto’s as confirmed by high thyroid antibodies
Hashimoto's affects the gut and frequently 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
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
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too.
Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Also request/politely insist GP test vitamin D, folate, ferritin and B12
Or test privately along with FULL thyroid test
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
75mcg is a low dose levothyroxine unless you’re extremely petite
which brand of levothyroxine are you taking
Do you always get same brand
If left on inadequate dose levothyroxine, low vitamin levels are highly likely
Low vitamin levels lead to poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)
This tends to lower TSH (all many GP’s incorrectly look at) as you end up with high Ft4 but low Ft3
Improving vitamins to optimal levels frequently improves conversion rate
So it’s essential to test vitamin levels and thyroid together
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly
I can’t provide the medical info you need so I’ll leave that to the experts, but your story resonates so I couldn’t scroll by! I just wanted to say that I’m a bit older than you, but have a very energetic eight year old, and I was in the same position as you - absolutely exhausted, only getting out of bed for about 20 minutes a day etc. The doctors wouldn’t listen to me. Everything was normal and I was given antidepressants. They did nothing for me and I had a gut feeling that something was physically wrong. I ended up going to a functional doctor who was previously an NHS GP and she tested everything. By this time my TSH was over the top end of normal and I had antibodies.
Things do get better but I’ve found it to be a slow process. I think I’m on the right dose of thyroxine now so just need to wait for my next test. I’ve also just started working on my vitamin levels. After about 12 weeks, I found that I could get out of bed and stay up till about 6pm but my husband was doing all the household stuff. After four months, I’m working from home. Still tired and having to go to bed at about 7pm but it’s a vast improvement.
If you take the advice given here and advocate for yourself, you will definitely get better xx
Quick reply to say I could’ve written so many of your words myself too.
Finding this board is going to be the best thing that ever happened to you! You will learn things about how Hashis works, how to read your blood tests, and how to optimize your thyroid hormones and the vitamins/minerals that matter.
Read Jaydee and SlowDragons advice. Your next step will be to get the right blood tests. If you have any specific questions, reply and ask. It’s a lot of information and you have a whole community of people here who have been there/done that.
Let this post and all our responses give you hope.
It is a slow process, but you are on your way and we are here for you.
Wow I’m just so overwhelmed with the responses, thank you all so so much 🤗
It’s nice to know I’m not alone and that some of you have felt the exact same.
I have had my TPO tested and I am confirmed Hashimoto’s
Being on 75mcg means that I have to take 2 separate doses (50mcg & 25mcg) they are always different brands. I was supplied with one 75mcg tablet once, but it’s never been in stock or available since. I have changed pharmacies countless times and been told there’s no longer a supply of 75mcg, I must therefore take 2 separate doses from 2 different brands. I wonder if that will always have an affect on me.
My doctor has recently tested my TSH and T4. My result was:
TSH 0.96 miu/L
FT4 19 pmol/L
My last TPO result was 1300 iu/mL
Would I perhaps benefit from having a higher dose of Levothyroxine? Perhaps I should be on 100mcg? Only reason my dose got reduced to 75mcg about 2 years ago was because I ended up going hyperthyroid.
I am petite in height (5ft 1) and my weight is 68 kg.
I had some bloods done today, for vitamins and a celiacs test. So will wait to see those results.
I will certainly order a full thyroid test as recommended. Would a full thyroid test show if I’m having trouble converting T4 into T3?
I’ve read about taking a DI02 gene test, is that really needed?
Its best if you can get the same brands at each prescription even if you have 1 brand for the 25 and another for 50mcgs. Your GP can write your brand preference on your presciption in the first line, see example.
Can you add the reference ranges for each test - numbers in brackets after your result. The vary between labs.
Your estimated dose would be 108mcgs Levo but you may need slightly more or slightly less.
The time and way you take your thyroid test is very important and can affect how high or low your TSH is (it varies throughout the day) and the same with FT4. Taking Levo not long before the test gives a false high result.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
You cant go hyperthyroid on Levo, its over replacement. Often this is due to taking Levo just before the test and testing later in the day than 9am.
A full thyroid test will show your conversion of T4 to T3.
Wait until you get FT4 & FT3 results before thinking about DIO2 test. Its really only needed if you need T3 added to your Levo and some Endo's like to see it before they prescribe T3.
Start a new post when you have the vitamin results.
SlowDragon FallingInReverse Smartypants1
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I cannot really add to the above, but just to say when my T3 was low, my heart skipped beats all the time. When I added T3 to the mix, my heart was fine. I dont think I was ever on enough T4.
And sending a hug - I know exactly how you feel. It takes time, but with the brilliant help on here, you will feel better. Many of us have been where you are now, so just imagine a huge army of ex-worn out women who now have normal lives, enjoy things, cheering you on!
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