Hello everyone, I hope someone is able to shed a bit of light on this crazy life of mine.
I have been underactive (diagnosed and on levothyroxine for 12 years now) and, just like everyone else, has a constant battle with getting heard!
Around 8/9 months ago I had a small lump appear on my collarbone on my right side. I left it as I was currently battling ongoing endometriosis and recovering from more surgery. Unfortunately last year a HSG test went horribly wrong due to a doctors sloppy neglect, I ended up with Sepsis and removal of my right ovary and fallopian tube. To cut a reaaalllyyy long story short, I am currently 3 weeks post excision surgery for more endometriosis. However, I saw my GP 4 weeks ago to discuss this lump and how my fatigue and weight gain is getting progressively worse.
My TSH and T4 have never been within rang (0.4 - 4) and I've always fluctuated between taking 75mg and 100mg for years. My chest pains have been getting worse (heart all been checked with CT, MRI, 24hr ecgs etc) and this little lump was starting to ache.
My GP sent me for another ultrasound on my neck and my TPO antibodies came back at 432 ( range 3 - 30). They have found a lesion on my thyroid and a couple of nodules on the Parathyroid, but feel that the lump is a lymph node. I then had nuclear radiation scan.
My TSH always hovers between 7.9 and 17. It was 27 a few months ago!
I finally got to see an endocrinologist today who has completely dismissed everything. He has said that the antibodies are not a concern being that high, and most people have nodules and are fine.
My questions of WHY I'm so extremely exhausted, the weight gain of 3 stone in a year, nausea daily, pains in my chest jaw and back, my skin covered in ezcema and my scalp. I've had gastritis for around 15 years but I know this has worsened and I saw my gastroenterologist who believes the thyroid is worsening the symptoms. Just generally feeling so poorly all the time.
He has discharged me back to my GP to discuss the nuclear scan as he said he doesnt need to, and that I should be referred to ENT for the lymph lump.
I am so exhausted from constantly trying to get answers and help. My recent surgery has gone fantastic (had to pay private but worth every penny) and me and my husband have been TTC for 3 years now, so now is the time to get my TSH within range.
Please anyone with experience in this, please comment your thoughts.
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Rachel1989
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If your TSH is so high you are EXTREMELY under medicated...or not absorbing the 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
Endocrinologist needs to go back to medical school if they think TSH of 17 is fine
See your GP for immediate 25mcg dose increase in Levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
as you have Hashimoto's low vitamin levels are EXTREMELY likely
Do you have recent test results for
Vitamin D
Folate
Ferritin
B12
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
What vitamin supplements do you currently take?
Are you on strictly gluten free diet?
If not that's always worth trying
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
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
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
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
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
I tested negative for coeliac disease 5 weeks ago, but I have tried to go gluten free a year ago.
I've had Vitamin D, Folate and Ferratin tested 6 weeks ago and because they were 'just' within range they refuse to supplement me.
I currently take folic acid and Vitamin D for my own accord.
In regards to TTC I have the best possible chance at the moment due to just having extensive excision surgery, and my gyne has advised that the next 3 months are crucial as I only have one ovary and stage 4 endometriosis.
I am due to see my GP tomorrow to increase my levo (and yes I do push for the same brand as when this is changed I do feel the difference!) And also request a repeat of vitamin bloods.
I'm concerned with the parathyroid and the lesion that they see along with the 3mm oval shaped nodule. Hopefully I will get the results tomorrow.
I have never had any luck with endocrinologists, I am looking to go private but unfortunately the same two are also the private ones in my area! (West Midlands)
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
I have a lump on my collar bone Dr Skinner told me it was a fat pad and completely harmless. It hasn't got any bigger but I am aware of it if I look closely. You definitely need to increase your medication btw. When I was very ill with Graves it affected my my periods and I ended up having 3 uterus biopsy's to check for cancer because of excess bleeding .... I think it was caused by thyroid disease because even though I had 5 small fibroids they were not big enough to cause problems. I have now gone through the menopause and feel great now no flooding and wearing tampons as well as pads and having to take tablets to slow down the bleeding so I could actually go shopping etc. I hope you get the help you need.
Rachel1989, a TSH between 7.9 and 17 is far far too high. This is your body screaming out for more thyroid hormone replacement. These hormones are needed by every cell and tissue in the body, so inadequate thyroid treatment will be making you very ill and may be responsible for some of your other health problems.
If you've got vitamins just inside the range then this means they're extremely low, too. Most need to be at least halfway up their range to be optimal, and having these low can cause symptoms, too.
You'll almost certainly have a big improvement if you can improve thyroid levels and improve your vitamin levels. With vitamins you can start treating them yourselves almost immediately, read the advice of knowledgeable members here, because its important to get good quality supplements.
For thyroid you should have an increase of 25mcg of Levo ASAP, a retest in 6 weeks and probably raising and testing every 6 weeks several times to get where you need to be. It's much better to see a full thyoid panel of TSH, freeT4 and freeT3, but unfortunately you will probably need to buy your own to get it.
My chest pains have been getting worse (heart all been checked with CT, MRI, 24hr ecgs etc)
I get chest pain from severely low iron and/or ferritin. It is not a good idea to supplement iron without having a full iron panel done - something like this :
I tested negative for coeliac disease 5 weeks ago, but I have tried to go gluten free a year ago.
You will always get a negative result for coeliac disease if you've been eating gluten-free for a year. For an accurate / realistic result people need to eat lots of gluten for six weeks before testing for coeliac disease.
I've had gastritis for around 15 years
If you've got gastritis then you are very likely going to get benefits from going and staying gluten-free even if you don't have coeliac disease. It may take a while for gut healing to begin or become apparent. People have to stay 100% gluten-free all the time to get benefits. Doing it for, say, 5 or 6 days a week and eating gluten the rest of the time will never show any improvements.
I can understand why people want to know if they have coeliac disease. But even if you don't have it it is worth the experiment of going 100% gluten-free for about three months. I don't have coeliac disease but I got benefits from eating 100% gluten-free within about five days or so.
You are clearly under medicated which is actually dangerous. Find a decent endo. If you can’t find one on the nhs go private. I did. He is amazing. Ask for private message for a good local one near you. Good luck.
Do not try to conceive until your tsh is below 2. Otherwise the likelihood is that you will miscarry, and I would hate for you to have to go through this. The NHS guidelines are to be monitored to remain below 2 for the whole pregnancy and babies will take thyroid hormones from you so will reduce yours more.
It is also widely accepted that a high TSH can lead to a child with autism.
Finally, babies are hard work, make sure you have sorted your health first. Get tested for the MFTHR and DIO2 gene mutation, you may need to pay for these. Then get T3 treatment if you have these.
Rachel, very sorry to hear about your health struggle and NHS neglect. I can relate as my daughter lost one ovary due to her doctors incompetence. She didn’t develop sepsis though as we went abroad for diagnostic and surgery after losing our hope with NHS.
My thoughts regarding your health issues: they are systemic and all interconnected and you need a different approach to heal (not just medication).
Problems with gut ( which you have for long time) lead to body inflammation and your poor immune system is in overdrive. Skin problems usually come late and mean your liver and your body are struggling to function.
You already were advised to go gluten free. I would say you need to go for “clean” eating: no processed food, no additives, dairy free, sugar free,
You should eat organic fresh fruits, organic fresh and cocked vegges, white fish from time to time. Juicing is a good way to give body nutrients it needs.
There are many books and videos for information and inspiration. You can look at Hanna Sillitoe blog and book. There are Medical Medium books with loads of good info - just ignore the medium part 😊
There are videos on YouTube about juicing - will try to find and send you links later...
Do your own research and try what you think might work for you - snd listen to your body feedback.
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Feeling a little lost.
Totally lost having had my blood test results
Lost voice :(
Lost and frustrated
Lost newbie
