Help! Hypothyroidism and Hashimoto's to Add on to 2 1/2 years Worth of Chronic Daily Migraines

Hormones
1

Not really sure where to start but I need some help!!!

 I have just about given up asking my doctor for help as everytime I go they ask me what I would like them to do but then usually send me on my way without doing anything!

So here goes....

I started with 24/7 migraine headaches 2 1/2 years ago.  If I am not suffering with a migraine, I have a constant headache.  I don't sleep properly because my head is constantly banging.  I have an 8 year old child now who is very understanding!!   CT scans were clear and medication has pretty much got me through the last couple of years! Oh and I threw myself into extreme endurance sport.  Crazy..yes!  But it got me focused on something other than moping around the house thinking about how much my head hurt.  I caused the rest of my body pain so not to focus on how much my head hurt!  Then last October I started to feel unwell and I became increasingly worse over a period of a couple of months, my memory deteriorated rapidly, I was getting confused, couldn't remember where I was or what I was supposed to be doing, would even be driving and would totally blank out and then couldn't remember which side of the road I was supposed to be on or where I was going.  My vision went blurry and I was then rushed into hospital for an urgent CT scan which was again thankfully clear.  I always gets pins and needles in my hands and am constantly freezing cold.  My head is always cloudy.  I am always so tired, my hair falls out constantly, I cannot concentrate for very long at all.  I get dizzy, I am always trippping over things and falling into walls, like I am drunk, when clearly I am not!  I cannot exercise at all anymore because my energy levels are pretty much non existent.  The most exercise I do now is walk my daughter to school.     I am pretty much textbook for every single symptom of hypothyroidism!  But it has been an uphill struggle with the doctors for them to listen to me!  I have had to fight with them again and again and am still battling away and am at the end of my tether with them!!  They are now trying to tell me I am just depressed!  Maybe I am, but that is probably because, no, stop right there, I am not depressed, I am upset, very upset, that I can't do my extreme events at the moment and have had to put my training on hold because my body won't physically let me no matter how hard I try to push myself....that isn't depression....that is physical weakness....so please if anybody out there could help me just a little or give me any kind of guidance at all, or even tell me that they don't even think it is anything to do with my thyroid at all...then that's a start....I am desperate...clutching at straws...clutching at anything...I was stung last October by a wasp whilst out running and thats when all my problems seemed to get a whole lot worse....I had to go to the doctors and be put on antibiotics because my arm swelled up massively and I mentioned Lymes Disease afterwards but was told it had to be an infected tick and on thinking about it my dog had fleas/ticks a few weeks earlier (maybe the wasp just exacerbated it?!). I have never been tested for it!  I live in the North Yorkshire Moors (UK). 

Anyway here are the the blood results:

December 2012   TSH     3.77     (0.30-5.00)      NO  T4 checked

February 2014 - Serum TSH level   4.13 mU/L     (0.55 - 4.78mU/L)

November 2014 - Serum TSH level -    5.00 mU/L  (0.55 - 4.78mU/L)

November 2014 - Serum free T4 level - 13.4 pmol/L (9.00 - 23.00pmol/L

January 2015  TSH  Level -   5.13       (0.5-4.78)

January - Serum free T4 level -  12.00              (9.00-23.00)

Jan 15 Thyroid Peroxidase TPO ANTIBODIES      >1300  ABNORMAL!

Antibodies had not been checked before but the thyroid results had been increasing at every blood test.

Started taking Levothyroxine in January 2015 started on 25 mcg.

February 2015 increased to 50mcg.

I have had further blood tests in February 2015.

Thyroid peroxidase - Abnormal - screen is positive > 1300.0

Serum free T3 level - Satifsactory 3.7 (3.5 - 6.5)

Serum TSH level - 1.64 (0.55-4.78)

Serum free T4 level 16.1 (9-23)

Although my TSH level has dramatically decreased I do not feel any different so have recently had some blood tests taken at my request.  One of the results for serum folate said a fasting sample was preferred as recent folate may mask deficiency but there has been no recall for this to be done and another one with an exclamation mark next to it, but again no recall by my doctor is serum ferritin - 8.8 (normal range 20.00-291).

Would all those blood results seem okay for the thyroid? Can anyone shed any light on anything? Please?!

Thank you :-)

 

2

Hi Amy, you have all my sympathy,my antibodies are also 1300 plus, and i am due to have more blood tests next week before they give me thyroxine. They are going to test my Vit B12 & folate, Vit D, Ferritin, electrolytes and creatine, liver function tests, TSH and also test for coeliac disease. If you google each individual test you should be able to find the symptoms for deficiencies for each item, and see if there are similarities with your own symptoms.

I went on the autoimmune paleo diet, which really helped me for a few weeks, but ive now reverted to a 'mormal' diet so it doesnt skew the next rest results, but i will go back on it the moment that blood leaves my arm! If you are n Facebook there is a eally useful group called Hypothyroid UK which has lots of information in files, and very helpful members in similar situations to ours.

I am also struggling with the exercise, I had to give up taekwondo as i just couldnt recover between sessions. I was really pushing mysef at the gym tll last week, but really struggling this week.

Its also worth asking if you can have yourFree T3 testing, if you are in the UK they will probably refuse, but apparently its quite common that your body cant convert the T4 (Thyroxine) into T3 which is the 'active' hormone.

I also keep a diary of foods eaten, body temperature and pulse rate on waking up, any symptoms, exercise, weight, bodyfat etc. That way when I go back to the doctors I have 'hard evidence' and dont have to rely on my non existent memory!

Hope this helps, good luck.

3

Hi Amy funny you mention about migrains I used to suffer terrible with them few years bk I went like you also I would be unable to speak it effected one side with pins and needles really thought I was having a stroke but I always put it down to my thyroid problem as my mum had them too and she has a thyroid problem your ferretin seems very low it should be at least 70_80 mine is 50 but my doc said that is fine but I have been in hospital feeling I'll with palpations and feeling like my heart wasn't beating right they neva found anything wrong apart from eptopic beats but I'm still suffering I still think it's my thyroid making me I'll but I would ask your doc about your ferretin that can cause you to feel very tired

4

Sorry for not replying sooner....I forgot....this is one of the major problems I have....my memory...if I don't respond straight away, then I totally forget! It actually fries my brain!!

Hi Lisa, sorry to hear you are also suffering!

I had doctors tellling me that I had done too many sporting events last year and that my body just needed a rest! Erm no...I know my own body...there are plenty of people out there who do more than me and their bodies aren't telling them to rest....I get tired now doing a little bit of gardening....or evening walking to a shop! That isn't normal!  It's hard to accept when we are used to doing the physical exercise!

I looked at the paleo diet but being a vegetarian it looks quite hard to follow as being the 'caveman' diet quorn can't really be eaten and it said I would have to eat about a dozen eggs a day!  I have had to come off Facebook as I can't cope with seeing all my sporting friends doing all the events and training and me not being able to do anything, but when I go back on there I will check that page out.

I have had quite a few blood tests taken recently but I don't think electrolytes and creatine or coeliac were in there.  I have had liver function tests done and although they were higher and out of range when taken in November 2014 but no action required, when they have been done in March 2015 and were higher again but only by 1 the range has changed so they are now within the normal range so no action required. 

Your food diary is a very good idea and I think I will start to do that also.  Good luck to you and I hope your doctor is more on the ball with help and treatment than mine is and I hope you start to feel better soon and can back to training!!!!

:-)

5

Hi Rachel,

Sorry for not responding sooner, I totally forgot...part of this blooming illness, if I don't do something as soon as it comes into my head, then it goes straight back out and I forget about it until I am reminded again!!!

My doctor hasn't even called me back to discuss my ferritin levels...even though on the printout I asked for, it is in bold with an exclamation mark next to and says it is 12.2 below the range!! And she knows how ill I have been but doesn't  think it is worth discussing it??  Sounds like you have had a terrible time of it too!  Hope you get fixed it, it is so scary not knowing what it the matter with our bodies. 

6

Hi Amy that's not good you need to speak with your doctor as your ferretin is quite low have you had your vid d checked that can cause so many problems too I was told when you have underactive thyroid our ferretin should be at least 70 to 80 my doc just said it iron level is fine and that was that Hope you feel better soon

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Amy, I'm pescetarian, was vegetarian but its a compromise as the paleo as a veggie is a nightmare! I'd really recommend that you try and go gluten free, and dairy free if you can manage it. there seems to be a lot of evidence to show there is a correlation between gluten and hypothyroid, particularly with hashimotos. Make sure you take a b12 supplement, and i always fel better if i have a 'gluten free yeast extract drink' not marmite, it has gluten in it. Vit D is another big one, your levels need to be optimum, not just in range. Absoultely definitely avoid soy at all costs, it can prevent your body from absorbing thyroxine, and dont take any supplements, orcaffeine within 4 hours of your thyroxine.

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Amy, I've just read your original email again, your ferritin is definitely low. Recently my cousin had similar symptoms. Her iron was 8.3, she was called in for emergency prescription and told that if it had dropped below 8 she would have needed a blood transfusion. As far as I am aware, Ferritin is the iron stored in your body, and im not clear on the difference between iron and ferritin. I'd suggest you go back to the doctor and ask them to explain the two, what your levels men, and if you should tke supplements. And if necessary see a different GP or change to. new surgery. Dont give up!!

9

I don't think I could go pescatarian, I have been a vegetarian for 20 years and the thought of eating fish makes me feel physically sick.  But going gluten free is something I would definitely look into and dairy if I really had to! Thank you for your comments they are really helpful! Didn't realise about the soy!

Wow, as if your cousin's levels were so low!! I have booked an appointment to go to the docs on Friday to discuss the blood results.  Can't believe with the way I have been feeling that my doctor hasn't called me in to discuss the results! It's like once you have walked out of the surgery you are forgotten about! Well I have a list now of other tests I am going to ask to be done so will keep on at them until hopefully they find out what else it is that is causing me to feel like this!  And if they can't find out then I guess the only alternative is to find someone else who can!

10

I have had my vitamin d checked and apparently it is fine even though I thought it would be low!