Hi, over the last 6 months I have been in and out of the hospital and doctors. It started with a huge build up of non bacterial fluid in my breast for no apparent reason. No one seemed concerned as to why this had happened and just (excruciatingly) drained it. when it happened again breast cancer was ruled out but no further diagnosis. I changed GP as again I had no answers. the new gp gave a full blood work up which was flagged up at the hospital as potential hypothyroidism but nothing else. The gp said it may have been raised due to the inflammation in my breast and to do the bloods again in 4 weeks. the next test showed at
TSH 10.74
T4 12.8
and despite me saying i was sleeping for 15 hours a day and having had lost about a 3rd of my hair over the last year she still said i was wasnt hypothyroid and she would do a test in 3 months. she blamed the symptoms maybe due to my breast and maybe another underlying problem.
In the mean time the breast issue was diagnosed as Hidradenitis Suppurativa an autoimmune inflammatory disorder. which I cant help think will be exacerbated by such a low thyroid. Plus both my mother and sister have had almost lifelong battles with their thyroid ...so wouldn't being on thyroid medication now help with both that just snowballing like my family members and the HS? But I cant force her to give me meds and I don't want to change gps again?
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doglover100
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Hi doglover, this is exactly why so many frustrated people are on this forum. Your experience is one of many, many, many and it's outrageous. And nothing is "for no apparent reason" unless you are completely blind.
Your body is intelligent (more than doctors) and ALWAYS has a reason plus, always tries to heal.
It's compounded as they already have the evidence of your family history.
The problem is that there are few doctors who look for the underlying cause (and there always is) so the common therapy is a hormone pill. This is not the best option and it's obscene that even THAT is being withheld from you.
We are not doctors but are here to encourage people who are being neglected by the profession and learn from people who are successful by acquiring NDT or Levothyroxine from the common market which often proves to be very inexpensive. It is a big shift that has to be made mentally by you but once you start educating yourself you can see for yourself the shortfall of knowledge by your very nice GP.
thanks for the swift reply Heloise... I have been self treating to a degree at first unaware I was doing so and then more concerted after further investigations. I went on the cleanest diet imaginable no gluten no dairy no meat no cooked with suppliments including adaptogens etc myself before any diagnosis as it was the only way I was able to get out of bed and act semi human. it wasn't even for weightloss as ironically I didn't even being over 200 pounds. I didn't go to the doctors at tht point as I have a fear of them after seeing family members treated so badly by them. When the breast issue diagnosis and subclinical hypo thyroid came up I then went even further giving up nightshade family vegetables (which has helped abit) and taking selenium, zinc, b12, iron and tyrosine. After reading the links do people recommend NDT and if so where is the best place to get it?
If you are in the UK, post a request for private messages regarding purchase of hormone. I would always recommend NDT first because it has many of the T's plus calcitonin which I think is gaining importance. There are many good ones available. If you are financially unable, levo is cheaper.
It's good you are doing things on your own. I wish doctors would look into actual causes for your particular issues. The short video is one of 24 REASONS for low thyroid so it is complicated.
Help yourself and possibly help your family as well.
Keep posting and asking questions. There is so much to learn. More of Dr. Clark's reasons are at you tube.
It is not as if we are asking for something to make us high - it is us to give us 'life'.
I note you don't want to change your GP, yet again, you've obviously had a problem previously.
You can always self-medicate and as your mother and sister already have hypo you are all aware of how to treat.
If you want to self-medicate. You will have to put up a new post requesting a Private Message be sent to you with information of where to source levo.
When we have blood tests for thyroid hormones it has to be as early as possible, fast also. This allows TSH to be highest (not that your's hasn't reached the point). If on medication allow 24 hours between your last dose of levo and the blood test.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
when we read similar problems as you have incurred.
You really need to know if you have raised thyroid anti-bodies to know if you have autoimmune thyroid disease - known as Hashimotos, the most common cause of hypothyroid.
NHS guidelines say GP should treat if a patients TSH is above 10 if they have hypo symptoms and no anti-bodies.
But if also have raised antibodies, hypo symptoms and TSH above 5 then GP can consider a trial of levothyroxine to see if it improves patient. (In Europe and USA the threshold for possible treatment is a lower TSH of 3 or 4)
So Your GP really should test for TSH, FT4, and very important to test for BOTH types of thyroid anti-bodies - NHS often only test for one.
ideally should also test for FT3 but this is rarely done by NHS
If you can't get these blood tests done by GP on NHS, it is easy to get done privately. Many people here have had to do the same, either to get diagnosed in first place or to manage on going adequate treatment - see thyroid uk for more info on private options
If you can get your GP to do further tests -you are entitled to know the actual results. Important to also get the ranges - (figures in brackets) as each Laboratory has slightly different ranges
also ask GP if they could please do blood tests to check your Vitamin D, folate, ferratin and B12. It is common for some or all of these to also be low in hypo patients. They need to be above half way in range for thyroid hormones to work.
If hypo due to Hashimotos - Gluten free / dairy free diet can sometimes lower antibodies and improve symptoms.
Auto-immune problems commonly run in families. If you have close relative with thyroid or other immune issues you are more likely to have them yourself.
thanks for the replies on this...... after another flare up of the hidradenitis over the weekend I bit the bullet and saw a different GP and had a completely different response....... she said no the results on the tsh were not wholly due to an infection and that I should have been medicated straight away in response to the hospital flag up.. she said having an underactive thyroid had been causing all my other issues and that it was not helping my HS at all feeling so low.... she also said just by looking at me that she believes I have thyroid nodules ( she was trying to be polite and I said the double chin?) and has orderd an immediate scan and a full blood work. plus she gave me long term antibiotics which I had been begging for regarding my excruciating hs and the previous gp would only give it for a week at a time. I'm vaguely hopeful that I might actually feel like a semi normal at some point in the future.. lets hope so!
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