I'm female, 60 years old, 10 years post menopause, have high TPOs and am on 50mcg levothyroxine a day. (Amongst other things, I also suffer with fibromyalgia and chronic fatigue.) Over the last 7 months I've been experiencing bouts of sudden, severe and extremely painful mastitis, alternating in both breasts, for which I have been prescribed antibiotics. I've been referred to my local NHS breast clinic 3 times so far; they have done mammograms and ultrasounds, which apparently showed nothing abnormal. And I've had private blood tests done for prolactin and diabetes, but the results were within range. Has anyone experienced recurrent mastitis and breast pain post-menopause like this?
I've read up a lot about what could be the cause, e.g. keratin plugged ducts, duct ectasia etc., but at the breast clinic all I kept being told was that it was due to inflammation with possible secondary bacterial infection. The docs at the breast clinic they aren't interested in looking into what might be causing my mastitis. I'm therefore faced with a life living from one round of antibiotics to the next and trying to cope with the side effects that they give me.
I am at a loss as to who to consult about this...I was wondering whether an endocrinologist might the specialism I should opt for, since I have hypothyroidism.
Any experiences, advice and thoughts about this would be gratefully received.
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Canyou post your most recent thyroid tests- TSH, FT4 and FT3 including ranges
50mcgs is usually starter dose. Bloods retested after 6-8 weeks and if TSH not at lower end of range (around one) Levo dose increased by 25mcgs and retested in 6-8 weeks time.
Raised prolactin (prolactinoma) can be a symptom of being hypothyroidism and possible cause of recurrent mastitis
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working.
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Food intolerances as result are common, especially gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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 money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
My recent bloods for TSH and FT4 were both within range and at the lower end of the range. (I didn't take my levo for 24 hours before the test and the test was done in the morning.) I'm not near my home files at present, so I will have post the exact results later on.
I've been on the same dose of 50mcg levo a day for several years - my GP won't raise the dose because I'm so called 'within range'...I am at the lower end of the within range for FT4, but I am also mindful that levothyroxine is liable to worsen a rare eye disease (ocular myasthenia gravis) that I suffer with, so I have to be careful.
My recent blood test for prolactin levels were within range too.
I'm vitamin D deficient, but whenever I try and supplement it it greatly worsens my mastalgia. Also, whether it was purely a coincidence or not, when I recently tried supplementing D3 again (at a low to medium dose) that was circa the time when the mastitis first occurred with a vengeance...and my breasts haven't been the same since.
Folate, ferritin and B12 were all within range (I will also post the results when I'm next at home). Whenever I supplement with B12 it makes my fibromyalgia worse (I supplemented B12 because I read that the ranges weren't accurate).
I've been on the same dose of 50mcg levo a day for several years - my GP won't raise the dose because I'm so called 'within range'...I am though at the lower end of the within range for FT4, but I am also mindful that levothyroxine is liable to worsen a rare eye disease (ocular myasthenia gravis) that I suffer with, so I have to be careful.
O.K. no surprise there then @ 50mcg. You have been on a starting dose for seven years of your life incurring more and more clinical symptoms which no doubt are 'diagnosed' as 'something other than to do with the thyroid gland'. Also Fibro and CFS are interconnected and with these usually liothyroine (T3) and not levothyroxine (T4) can help relieve symptoms.
If you can afford a private blood test I would recommend it. I think all of your problems are due to such a low, dose. One doctor now deceased who prescribed upon clinical symptoms said that we are now in a very parlous state due to the reliance on referring to blood tests only.
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Ask GP to test B12, Vit D, iron, ferritin and folate.
Usually people who have fibro/cfs cannot convert levo properly to T3, so you may have to have T3 prescribed but unfortunately they have stopped doing so in the last few months. Members have had to source their own.
Levothyroxine (inactive) is T4 and has to convert to Liothyronine (active) T3. T3 is the only Active Thyroid Hormone and is required in our billions of T3 receptor cells.
Blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of levo and the test and take afterwards. This helps keep the TSH at its highest as doctors only look at the TSH. They ignore the most important FT4 and FT3.
Get a print-out of your results with the Ranges. We need the ranges in order to respond as labs differ.
Before blood tests were introduced along wih levothyroxine, usual doses of NDT were between 200 and 400.
My ocular myasthenia gravis is further complicated by the fact that it's sero-negative, so it was a devil of a job to get a diagnosis (I was pushed from pillar to post)...I was though eventually offered prednisolone to treat it by a neuro-ophthalmologist at Moorfields eye hospital, but being post menopausal, not on HRT and suffering severed muscle pain anyway, I couldn't risk the side effects, so I just put up with my binocular double vision and droopy eyelids. (The neuro at Moorfield used my high TPOs as a 'substitute marker' in the absence of the antibodies that usually cause myasthenia, so you're dead about the connection.) My TPOs are indeed high.
I took the DIO2 gene test last year and it was negative.
I'm currently under nobody's care other than my GP's - Where should I aim to be treated? I have no idea where there are any centres of excellence. I'd greatly appreciate a pm if you can suggest somewhere; I'm located in Buckinghamshire. I'm on my last legs to be honest; I used to be a fighter, but I'm a worn out shell now.
Thank you, Shaws. I had my T3 tested last year and it was within range also. I'll have it done again and post the results up. I was thinking of seeking out an endocrinologist, privately if necessary, who might prescribe T3 and do other blood tests as necessary - I'm in Buckinghamshire, if you might possibly know of someone who I could refer myself to - I guess we can't name any medics on here on open forum, so I would be grateful if you could pm me if you have any suggestions.
It is Free T3 rather than T3. T4 and T3 are the commoner ones tested but ask for Free T4 and Free T3 and this is an excerpt from the following link:
FT4 = FREE T4
Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.
The approx. reference range for this test is 10 to 24
FT3 = FREE T3
T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.
The approx. reference range for Free T3 is 4 to 8.3
We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).
With all of these tests, your results could be anywhere within the range and you would be classed as "normal". If you are at the very edge of the range, either at the bottom or at the top, you could be classed as "borderline". Neither you nor your doctor truly knows what your normal is, if you did not have a blood test done before you became ill. There are also particular reasons why the blood tests remain in the normal range. If you are not converting from T4 to T3 or if your cells are not taking up the T3 normally, your T4 levels and your TSH levels will still show as normal.
The Broda Barnes Foundation tell us "Dr Barnes found that the primary reason for the inaccuracy of the blood tests for thyroid function is that the thyroid hormones are not utilized in the blood, but are utilized intracellularly. Therefore a patient can have enough thyroid hormones circulating in the blood to give a "normal" reading, but if the hormones are not getting into the cells, the patient will be hypothyroid.
Also, there is a problem of low blood volume in hypothyroid patients. This means that any blood test value will appear higher than it actually is because the patient has a lower than normal blood volume. In many patients with "normal" or "high" thyroid blood levels, but many clinical symptoms, the patient's blood levels actually drop lower once the patient is given thyroid hormones simply because their blood volume increases.
NB: Dr Bayliss tells us in his book Thyroid Disease: the facts "Do not take any thyroxine on the day when you go for your check-up and have a blood sample taken. The reason for this is that for about 4 hours after ingesting a tablet of thyroxine, the blood level of thyroxine peaks and will give a spuriously high reading". Other doctors I have asked tell me that it makes no difference. You decide!!
Thanks so much for all the information, Shaws. Come to think of it I believe it was FT3 that I had done and not T3 but I'll check my files when I get home. I'm going to get retested anyway though. I had absolutely no idea about the blood volume aspect.
Before I got sick, I too had no idea what a struggle it can so often be to get a diagnosis and appropriate treatment...Sadly, all the neurologists I've come across are just as bad - I struggled for years to get a diagnosis of myasthenia, just because none of their tests confirmed what my symptoms were telling them plus I'm sero-negative. I'm learning a lot from this forum. I'm so glad it's here to help us all.
Do you take probiotics when you take antibiotics? I always get yeast infections if I don’t take the probiotics . If you can get an appointment with a well recommended Endocrinologist! I have found there aren’t that many god ones in the United States, but I think you had better talk to someone about continued use of antibiotics. I remember way back that my breasts were sore I don’t know if from the Fibro, or Thyroid, which cause pain in almost any part of your body. Especially Fibro, You never know where or when Ghostlike pains occur!
You're so right about pains appearing in almost any part of your body!
And I am indeed concerned about taking antibiotics long term...As I'm used to living in pain, the mastalgia is defintely less of a concern to me than are the bad side effects of the antibiotics...
When I have to take the antibiotics I drink kefir every day which seems to help. If I'm on co-amoxiclav for 2-3 weeks - with taking the kefir - I don't get thrush in my throat and private parts...A month or more though and the probiotics eventually lose the battle with the onslaught of the antibiotics killing the good bacteria. I take kefir because I not long ago saw a TV programme where they did a mini scientific experiment to see which probiotic foods or supplements work best and kefir came out tops (...but I would be interested to hear from anyone if there's something that works better.) With any other antibiotics that I've tried, the bacterial die off starts straight away and I get bad diarrhoea, so I'm hoping that the co-amoxiclav continues to work for me when I need it. The surgeon that I saw at the breast clinic said he thought that my problem was actually inflammation of the breast tissues rather than a bacterial infection causing the mastitis, but they can't not prescribe me antibiotics in case they are wrong about that as mastitis can so quickly turn into sepsis. (They are unable to tell clinically or through tests or imaging as to what's exactly going on...a bacterial infection can also apparently occur secondary to inflammation, e.g. when then inflammation causes the milk ducts to burst and spill out their contents into the rest of the breast, contents which can sometimes contain anaerobic bacteria.) To be honest, I wish they would cut my breasts off (as extreme as that seems) as my breasts have been a pain and a problem all of my life - back ache, narrowed discs in my spine etc.
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