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Sticky Blood-Hughes Syndrome Support
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Getting tested for thyroid

Hi Everyone,

I know there have been many posts on here related to thyroid issues and testing. I just emailed my doctor about some recent weight gain I've experienced with no apparent cause and she ordered a TSH and T4 Free test along with glucose, fasting.

From what I've read online, the T4 seems more of a test for hyperthyroidism but that doesn't make sense as I believe I would more likely be hypo given my symptoms. Does that seem odd to anyone that she ordered that one?

Now that I'm reading the symptoms of thryroid it basically is as if someone wrote it about me. I'm cold all the time, tired, have dry skin, weight gain, muscle cramps, high cholesterol, irregular menstrual cycle.

Just as an aside, my first cousin has Hashimoto's (spelling?) and I'm not sure if that's a close enough family connection to matter or not but thought it might be related since we both have autoimmune diseases.

15 Replies

Hi, yes you are on the right track and it is not uncommon to have either hyper thyroidism, hypothyroidism, (which you are probably describing), or Hashimotos, when you have Hughes Syndrome. Please also join TUK on here they are a great source of information as is there actual charity: thyroiduk.org.uk/tuk/

Make sure they look at your iron, D and B12 also. The standard tests being done are the ones you are having done, unfortunately with some people the TSH is very unreliable, (patients and some doctors are campaigning about this) and can come back saying all levels are fine, which in many cases is not the case. I did extensive private testing via a lab that TUK recommend in order to get to the bottom of mine and not to be saddled with a 'FIbro' diagnosis. I am much better since treatment. Lets hope you show up something. Unfortunately labs and also some doctors are reluctant to test your T3 and Reverse T3 which can be very useful and certainly was for me, but you are starting in the right place. I gained all my information from deep reading and also being an on line member and paid up member also of Thyroid UK. MaryF


Thanks so much Mary. I will definitely look into the thyroid site.

I had my TSH tested in 2012 I think and it came back normal but this is the first time they've ordered anything besides that. I have already been given the fibro diagnosis but I believe it was only because they could not pinpoint why I have chronic pain (they said it was not due to APS and I tested negative for Lupus).

I did already have Vitamin D tested and it was low so I regularly take that every day. My iron has also always been low and I am going to start taking it again as I had gotten out of the habit of taking it.

I'm glad you were able to find answers for yourself and get treated properly. That is my hope as well; it's been a slow and long journey just to find out I have APS but I still have many unexplained symptoms I hope to figure out the cause for soon.

Thanks again for your advice and all the information. I have some reading to do about thyroids!


My TSH looked normal for ages I had every symptom going, however it did finally show up in that but I had already started treatment as I had done private testing... it is very very annoying. MaryF

ps here is the list of symptoms for hypo thyroidism: thyroiduk.org.uk/tuk/about_...

Even my carpel tunnel symptoms have improved as has similar in my feet!


Wow that's amazing that even your carpel tunnel got better.

I can't even tell you how much this sounds like me reading that list. It's actually kind of shocking how many of those apply to me and yet no doctor has thought to look more into this.

Where I get my healthcare in California is not too bad. I think if I pushed, I could get them to do the other thyroid tests if these show nothing. My doctor has always been willing to run as many tests as possible to cover every possible base.


and in the USA you are more likely to get hold of natural desiccated thyroid which works far better for some people, even Hilary Clinton takes that! Mary Shomon is not a medical doctor but her pages are very informative, I follow her as she is up to date with current information.

Note her history of blood clots also!!!!! dailymail.co.uk/news/articl... MaryF


Well that's good to hear! I will read up on that page also.

I also want to chat with my cousin as I know once she started her thyroid medication she felt a million times better.


Yes if you are on the right medication at the right dose it makes such a difference, I got my iron D and B12 all working well before I had the thyroid medication added in. Also in case the doctor forgets to tell you, if you are on iron, you need to take the thyroid medication four hours away from it. I take my iron at bed time to avoid it clashing....you need your iron to be good as it helps your thyroid up take the medication apparently. I am not an expert have learned from Thyroid UK, best of luck. MaryF

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I'm impressed that you can email your doctor. Wish my doctors worked like that.


Yes I'm very fortunate in that sense. I can also check all of my medical records and test results online. California is ahead of the curve in healthcare though. It's not as easy in other parts of the U.S. and with other health plans.


Often you can sent the odd email if it is very important to the secretary of a named doctor, marked for their attention. MaryF


Thanks. I'll try that if necessary -- like the snow is deep.


Where in CA are you? I'm in Alturas, CA, but we have no doctors that will respond to email. Records on line! Fantastic.


I'm in Pasadena and have Kaiser so they're all about electronic everything and preventive care. Is Alturas northern or southern CA?


Love Pasadena. I moved from Rancho Palos Verdes in 2000 to teach in Alturas. I feel like I have left CA. Alturas is the very N.E. Corner of CA -- the seat of Modoc County "Where the West still lives," I had a culture and a weather shock for awhile.


Oh wow yes you are truly in Northern CA! It's sad that it's so hit or miss with healthcare in the U.S. So much depends on where you live and who your employer is. I'm lucky on both counts as I live in a metropolis area and have a very progressive employer that made sure we have great coverage.


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