Good evening everyone, please can anyone help. After feeling unwell end of September I had bloods done my TSH was 6.7 and T4 level was 17.9 pmol( Normal range 12.0 to 22.0). After suffering with terrible symptoms for 2 months including swelling of the neck my GP finally prescribed thyroxine only 25mcg and was told to wait for 4 weeks to retest my thyroid levels as in subclinical hypothyroidism it was needed for two blood test to be over in order to start treatment. I did have positive TPO antibodies 394 kIU/L( all details on previous post) . Fast forward four weeks my TSH level is now 9.7 and T4 is 18 pmol/L, T3 wasn't tested even though was stated on the form. I have been started on 50mcg of thyroxine today. However I have been feeling just awful with added symptoms of feeling nauseous the past few weeks and not had much of appetite. With this I am having funny turns every at 5/6pm we're I feel so sick and need to lie down as if I am going to collapse, which has just happened now and my 7 year old daughter was so upset and worried about me. I had some chocolatewhich seemed to help but I have not been myself for over three months now and still off work. Just want to get better.
My results from my neck ultrasound- Thyroid gland contains bilateral small hypoechoic foci in graphic distribution likely to represent previous thyroiditis and or post-treatment changes, kindly correlate clinically. On this background no focal thyroid lesion andno gland enlargement. Unremarkable remaining neck including-parotid and submandibular bilaterally and no neck lymphadenopathy.
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Jeanette56
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I've asked for a referral to a specialist and been told it wouldn't be accepted but I just feel dreadful and my doctor doesn't really seem to know anything about this. Thank you xx
Last time your thyroid levels had just started to go hypo …..probably after the initial “hyper” phase when you lost a few kilo
High thyroid antibodies confirms you have autoimmune thyroid disease, aka Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid symptoms as cells break down releasing excess thyroid hormones. Thyroid hormone levels then drop and become increasingly hypo as thyroid becomes more damaged
Standard STARTER Dose Levo is 50mcg
Bloods will need retesting again in another 6 weeks
Likely to need further increases in dose over coming months
The aim of levothyroxine is to increase dose slowly upward in 25mcg steps until TSH is around or just below 1. Always TSH below 2
Most important results are always Ft3 followed by Ft4
Typically eventual dose is likely to be around 1.6mcg of Levo per kilo of your weight per day
So unless very petite, likely eventually on at least 100mcg levothyroxine per day
How to take levothyroxine
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I just wanted to reassure you that when you are on an optimal dose of Levothyroxine & your key thyroid vitamins are also optimal, you will feel so much better Jeanette56.
The journey to health can be long & bumpy, but you will get there! If took several increases in thyroid medication before I felt better & I also felt worse as mg body got used to new dosage levels. I personally prefer low & slow increases in Levothyroxine & found a pill cutter useful for splitting tablets.
It must be incredibly hard for you looking after your young daughter when you are feeling unwell. Do you have friends & family to support you? Keep posting if you need further advice & support.
In the first instance, I would ask your GP to run key vitamin tests (folate, ferritin, B12 and vit D).
thank you so much for replying. I think as the doctor was really reluctant to give me anything as I am still subclinical hypothyroidism but eventually has starting treatment so it's just taking a while to get her process started. I don't have a lot of family just my sister really and she's just had a baby too so I just want to be better. I've never had any health problems so it's all new to me feeling like this. I had all them tested ferritin was on the lower range of 36 ug/L ( range 13-150) b12/folate was high reading again 814 ng/L. I think I am being a-bit impatient and just need to wait for my dose to be increased gradually, just feels so long since I felt myself.
I would ask your GP for a full iron panel to explore why your ferritin is low in the range. humanbean has lots of great links for improving levels naturally.
I, like so many other members, have hugely benefited from eliminating gluten completely from my diet. Maybe one to try for a couple of months in the New Year…
You are being impatient I'm afraid, but it is understandable. I used to say "I just want my life back" so often at the start. But life won't be like that anymore. This is a new reality. You are on some medication now and you have been helped here to understand how to take it properly and what vitamins and minerals you need to take to support the medication. Now you just have to sit and wait. You are lucky you have never had an illness bringing you down before. The first part of hypothyroidism is to accept that you have it and that you will need to make adjustments to your life until your medication is optimal and you feel well again.
Not everyone does feels fully well again, although many do, so don't push yourself now. Rest. Get your partner (if you have one) to take on more of the home tasks. Explain to them that this is a long term condition and it's totally exhausting at this stage. There is nothing you can do about it. We are all different. It affects us all differently. I could not stop eating. My body was desperate for energy and tried to get it from anywhere it could find it. I ate and ate and ballooned in size. But I never found any energy from the food. You have gone the other way.
Our bodies often react to hormone changes with feelings of nausea. You will get over that. But for now, keep taking the medication as instructed here and 6 weeks after you started your current dose, ring up and arrange another blood test. Get that blood drawn first thing, before 9am and don't take your daily medication until afterwards. You need a 24hr gap between the test and the last dose. Don't eat or drink anything other than water before the test.
Ring up reception after each thyroid blood test from now onwards and ask for a copy of the results to be emailed to you. Keep them all in a folder. Make a note with them of the dose of tablets you were on at the time of the test and how you felt.
You will end up feeling much better than you do now.
You aren't "subclinical" that's a favorite phrase of doctors, but you have Hashimoto's Thyroiditis and your hormone levels will continue to fluctuate up and down until your own thyroid has been damaged so much it can't produce anymore hormone for you. So ignore that denigrating diagnosis. Take time now, in the early days, to learn about your illness and how it should be treated and how to handle it if it isn't handled well by your GP. We have to become very reliant upon ourselves with this condition. We have to learn how to assert ourselves in a medical setting. How to insist on blood tests when we need them. How to push for dose increases etc. But we also have each other to help. This forum is tremendously helpful. We have all been there. My recommendation is always to start with a very good thyroid primer by a wonderful doctor who really knew what he was doing (we sadly lost him a couple of months ago). He wrote:-
"Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it " by Barry Durrant-Peatfield. Find it on Amazon on the shortened link below.
Now try to not stress too much. Take a few deep breaths. Rest as much as you need to and let all the jobs that aren't essential just wait. Try to enjoy Christmas but don't overdo the drinking aspect or staying up late. Better days are coming. But it will take time and patience.
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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.
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 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
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
thank you so much for replying again, yes I got my vitamin D levels done they was fine the doctor said, negative for celiac, ferritin levels have improved slightly, B12 raised again- 814 ng/L.
Serum ferritin: 36 ug/L
Combined total vit D2 + D3 lvl:
77 nmol/LNormal range:No range
I weigh 67KG, yeah I think she is starting me on lower dose and building up but it's hard to weight when it feels like I haven't been myself for a while now. Thank you again for replying.
Okay I will get some vitamins now I was just waiting to get these blood tests. No I don't take any vitamins. This is my second high b12 and I don't supplement. This b12/folate it saids on it ? Is that tested for both. Thank you again for replying x
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) and continue separate B12
Post discussing how biotin can affect test results
Lots of info for you to work through- I was a recipient of forum wisdom and I worked through it slowly and diligently. I’m well now and stay to support others.
You need to self advocate and for that you need to understand your condition. I did this over weeks and months (still reading- it gets interesting when you get to grips with it). Remember, there is a limit to what can be digested when we hit into a new subject. Just a bit at a time. 🤗
I was in a similar situation to you and advocated up to a therapeutic dose of levo.
My bio is written like a case study and the pinned post on the NHS guidelines is the explanation of where you can use the guidelines to your advantage. I seriously encourage you to read this their own guidelines are the best thing to bargain with initially. I’m so glad you found the forum- the quicker the better. Note the dosing by weight. 😉👍
Try to read others posts it somehow accelerates the understanding.
thank you so much for replying. I have read through the NICE guidelines I think reading the increase in medication it's just to waiting game isnt it 6 weeks then retest. It just feels like I haven't been myself for ages now.
Thank you I will look at your bio and I do read others find it very helpful.
🤗♥️ The annotated pinned post on the guidelines is an exposé on the contradictions that you can exploit. I’ve kept the annotations plain speak. It is difficult for doctors when you are able to quote their own guidelines to them- and I believe the contradictions are in there to cover the NHS from litigation later down the line. Passes it over beautifully to the doctors, or does it simply mean responsibility falls through the cracks between. 🤔
I really feel for you Jeanette, I was diagnosed with hashmito hypothyroidism in 2020 and I’m unfortunately still not feeling any better.
So first and foremost I just want to send you the biggest hug and say you’re coping amazingly, especially as you mention you’re a mum too!
It would seem our usual GP’s are just not well equipped to deal with our array of symptoms that we feel. And, because most of the time the symptoms are not physical it also makes it extremely hard to prove that we don’t feel okay.
One thing I would say is the brand of thyroxine is important. It could be a contributing factor to how you are feeling I.e. sickness. I can’t take TEVA and since finding that out I spoke with my pharmacist and he agreed he would only buy in accord for me.
Secondly, I would highly recommend the book ‘be your own thyroid advocate’ by Rachel Hill. The information within this book is extremely useful and provided in a way that is not overwhelming.
Good call about the book - this was my first read also and provided an accessible inroad to a completely foreign subject. I cried a bit too. To be going through all this so young! Admire Rachel Hill!
I also have hashimotos and hypothyroidism as well as a severely lumpy and damaged thyroid showing on scans, pretty much identical to you. And I can honestly reassure you that you will feel well again. I followed the advice from the forum and hassled my GP, even putting in formal complaints because I knew I was still unwell despite "normal results". It won't be easy and it is a fight which can often be exhausting, but you will get there.
What I will say is that you will have to adjust your lifestyle a little, for example even when well, you might get tired more easily than normal or certain foods and drinks may affect how you feel. That is all very much trial and error for each individual, but you will adjust and figure out what works for you. Don't be afraid to put yourself first and say no to unnecessary things, even when you're well.
Be patient, keep fighting (noone knows you better than you do) and stay positive. It's not a quick road but it is possible. Keep your chin up xxx
Hi Jeanette56, I feel that your T4 is high enough within the range but your TSH is poor being over range. To me this indicates your T3 is probably too low. TSH measures both T4 and T3 levels. If the TSH is high this generally indicates low T4 or T3. In your case it’s probably low T3. I’d really press upon your GP to get your T3 checked. If they won’t or can’t you can get it done privately through ‘monitor my health’ on line. The other thing you’ve mentioned is feeling sick around 5/6pm this is a time when your cortisol drops naturally. I’d also suggest you request a 9am cortisol blood test and a synacthen test to check your adrenals. It could well be low T3 is effecting your adrenals. Your symptoms sound very similar to what happened to me. I found several things were running low in my body but the magic bullet was to introduce T3 combined with T4 I was already taking for my hashimoto’s. Unfortunately the NHS would not help me due to the cost of T3 medication so I went private only and was given a 3 month trial with T3 plus my regular T4 medication. It was nothing short of a miracle
If you’d like details of my private only endocrinologist please private message me. He does telephone and zoom aswell as face to face consultations so no need to travel if you can’t. It’s not overly expensive either.
First step is get your T3 level checked asap. If it’s low and your T4 is high then you are a poor converter. Also try and get b12, folate, ferritin and vit D bloods done to ensure they are all optimal. Many people with thyroid conditions have vitamin issues.
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