MRI Head and Neck February 2012 - normal apart from enlarged tonsils
Ultrasound Neck February 2012 - "Mildly enlarged thyroid and mildly vascular"
Medication
Levothyroxine doses
23 May 2013 - 7 June 2013 - 25mcg
8 June 2013 - 22 June 2013 - 50mcg
23 June 2013 - 9 August 2013 - 75mcg
10 August 2013 - 12 November 2013 - 125mcg
13 November - onwards - 150mcg
Vitamin D
12 December 2013 - 14 January 2014 - 800IU
15 January - onwards - 3000IU
Vitamin B12
15 January onwards - 1000mcg
Iron (Spatone)
October 2013 - December 2013 - 1 sachet
January 2014 - 3 sachets
Symptoms
* Depression
* Fatigue
* Constipation worse when eating wheat/flour/gluten. I was told this is not coeliac disease as diarrhoea occurs after eating wheat/floud/gluten and a coeliac screen was negative
* Dry/flaky skin
* Joint pain
* Heavy/early/late/short periods
* Short menstrual cycles - every 22-25 days (they were every 27 days)
* Painful periods
* Clumsiness/falling over/slipping/stumbling/dropping things
* Blackouts
* Acne
* Hyperpigmentation on back, legs and around eyes
* Puffy eyes
* Hair loss at outer third of right eyebrow
* Raynaud's
* Intolerance to cold
* Inability to gain weight (currently 7 stone 10 pounds/49 kilograms and body mass index is 19.7 - just about healthy)
* Slow heart rate - currently 54-63 beats per minute
* Low body temperature - currently 36.4-36.9 Celsius
* High blood pressure - has been as high as 131/95
* Mood swings
* Brain fog/forgetfulness
* Cramps
* Muscle weakness
* Excessive daytime sleepiness
* Nausea - seems to improve after eating something sugary
* Headaches - seem to improve after eating something sugary
* Watery eyes
* Easy bruising
* Pale skin
* Thin/fine hair
Family history
Mum - Diabetes Type 1 and Primary Progressive Multiple Sclerosis
Nan - Diabetes Type 1, High Cholesterol and Angina
Grandad - High Cholesterol and stroke before 40.
Other information
* Had infantile eczema/chickenpox
* Underwent operation in 2011 for a repair to the iliopsoas tendon (tendon in the hip) due to Hip Tendinitis/Snapping Hip Syndrome
* Have got generalised joint laxity/hypermobility
Situation at the moment - Endo has refused to do ultrasound as an MRI report was normal. However I have since brought to her and my GPs' attention that an ultrasound done in 2012 shows a "mildly enlarged thyroid". To me, enlarged is enlarged and I don't think asking for a periodic ultrasound is unreasonable.
Endo has also suggested I have a connective tissue disorder due to positive ANA results but I have no inflammatory markers.
Addison's has been ruled out.
GP has suggested in a letter I stop Vitamin D because they would rather wait until levels reached around 20 before considering supplementing.
Don't even think of leaving. This is the right place to be. I know nothing of auto-immune stuff as I don't have antibodies. But, it's as plain as the nose on any doctor's face that your antibodies are sky high and your TSH is swinging all over the place. I haven't looked at your previous posts, but I'd guess you have Hashis (?) and are swinging from hypo to hyper. You must feel totally awful.
Have you considered these two things which I've read can help with auto-immune stuff - Low Dose Naltrexone (there's a group on Facebook) and the auto-immune paleo diet?
Hi Rosetrees, thanks for your reply. I've decided to stay.
Well, long story short, my GP told me in 2013 I had high Anti-TPO antibodies. To me that didn't mean anything but she did then explain I had an autoimmune illness. I was then told in May 2013 I had hypothyroidism and 3 weeks ago my Endo has told me I have Hashimoto's but didn't put this in the report. Instead she put primary hypothyroidism but I've been told it pretty much means the same as Hashi's. So I guess my answer is yes I do have Hashi's.
I do feel pretty bad, yes. Things like joint pain and cramps don't occur all the time, just on and off, but the other things are always there.
Yes, I've considered LDN but I would have to persuade my GP to prescribe this for me so thank you for that. As for the auto-immune paleo diet, I'd like to consider that also as long as I'm able to swallow foods in the diet. (I still have pain on swallowing, for some reason). Thanks for your help on these.
"* Constipation worse when eating wheat/flour/gluten. I was told this is not coeliac disease as diarrhoea occurs after eating wheat/floud/gluten and a coeliac screen was negative "
You might not be coeliac but you might have gluten/wheat intolerance/sensitivity which is explained by your constipation being worse when you eat more wheat/flour etc. Gluten intolerance is strongly linked to autoimmune disease. I do think you would benefit from going gluten/wheat free for a few months to see if it helps your symptoms.
Other symptoms you have mentioned linked to gluten intolerance are: headaches, mood swings and fatigue.
Yes, I did go wheat and gluten free for a week and the constipation went away. I tried gluten-free bread too and although I was constipated to start with, eventually this stopped. So going gluten-free would be ideal but gluten-free food is generally very expensive and I have no income.
The other symptoms I have that suggest gluten intolerance don't occur at the same time as the constipation.
Hi Jo, Are you considering raising your levo to 175?
Your blood tests look very good. The ones that are low are even good but I was wondering about your HbA1C. Do you think you could get those ranges? In the U.S., anything over 7 needs watching but your standard may be different.
Your scan mentioned that your tonsils are enlarged - this could be to do with the inflammation in your thyroid with the Hashimotos. The tonsils are the first line of defence in our bodies and fight off invaders too. Could be why you find swallowing difficult at times.
I see you mentioned that gluten foods are expensive - just wondered which foods you meant. Gluten Free flour is not much more expensive than normal flour and you could make drop scones easily to spread fillings onto. Am happy to help with recipes if you are interested. I have sheeps yogurt for breakfast - home made soups for lunch and something with loads of veg in the evening. Rice cakes and home made drop scones ( like mini pancakes ! ) with home-made dips act as snacks along with fruit and nuts. Am sure you would feel the benefit - I don't think the two weeks you tried before was quite long enough.....
Re the enlarged tonsiles/Hashimoto's could it also be why I get tonsil stones sometimes? I seem to choke on and cough up small yellow/white stones that don't smell very nice.
With the gluten-free foods, I've found that bread and pasta are the dearest and get these from the clearance aisle when out shopping.
Thanks for offering to help out with recipes. I'd very interested to know more.
Yes, I'm not entirely convinced the two weeks I tried was long enough either but the constipation has slowly crept back in and I can only think it's from the gluten/wheat/flour I had eaten.
Jo xxx
Hi reallyfedup thanks for your reply.
No I have not taken thyroxine for 24 hours before the tests.
Is it safe to stop the thyroxine and just take the iron supplement?
I would be able to get hold of T3 and NDT from safe web sources provided that they are not expensive.
Eating gluten-free foods would be a very bad move. They're usually filled with all kinds of nasties, even soy, and have no micro-nutrients as such. Empty calories with no real healing nutrition.
Auto-immune paleo is about cutting out all processed foods and eating as naturally as possible. It can be done on a budget. It involves cutting out all grains, dairy, legumes, as per a usual paleo diet but also temporarily removing nightshades, spices, eggs, and other food items then carefully reintroducing them to see if any cause reactions. There is a wealth of info here:
The thing to remember is that illnesses like Hashi's are actually a symptom of something else, that something being inflammation from auto-immunity. So while thyroid meds help restore your health to a degree they do nothing to help the actual disease process. I know a lot of people with Hashis who just develop one auto-immune symptom after another, IBS, arthritis, Crohns - because it is often a disease pathway for
This video is also one of the best explanations out there for the importance of upping micronutrients for auto-immune illnesses. Dr Wahls includes MS and ME/CFS in that.
Previous GP practice thought I had endometriosis and was suggesting I be cut open to find out. My periods do come when they're meant to but I'm on a really short cycle. I don't know if the term "irregular periods" fits my situation.
I've only had one blackout and it happened while I was still conscious. My brain just sort of cut out - as if the blood supply was cut off for a second or two. I couldn't think, respond, do anything.
To have POTS wouldn't that mean I would need to have low blood pressure upon standing? I seem to get high blood pressure AND low pressure upon standing as well as hearing my heartbeat in my head. Could that be POTS?
PoTS is defined as a sustained increase in heart rate of 30 bpm within 10 minutes of standing or upright tilt (during tilt table testing) or an increase of heart rate exceeding 120 bpm on prolonged standing. A heart rate increase of greater than 40 beats per minute is required for those aged 12-19. These findings should be associated with symptoms of orthostatic intolerance, such as dizziness, fatigue, sweating, nausea, palpitations. Other dysautonomic features may occur affecting digestion, bladder control, temperature regulation and stress response.
I noticed that your ferritin is low and that you are taking 3 spatones a day. This may/may not get your levels up so good to get rechecked in a couple of months. I have found Vitabiotics Feroglobin capsules to be very good and I have had major difficulty getting my iron levels up and preventing them from falling again - Maddie
Hi Maddie, thanks for your link. I'll look at that in a second.
Of the symptoms you've described I have orthostatic intolerance (not all the time) dizziness, fatigue, nausea (sometimes) and palpitations. Bladder control - I have trouble registering when my bladder is full and when I do it's too late. I'm wondering if this is characteristic of POTS. Temperature is always low, below 37 degrees Celsius.
I'll see if I can get Feroglobulin capsules online or in store so thank you for letting me know.
Hi again - I forgot to mention that Joint hypermobility Syndrome may be one of your conditons. I noticed that you did mention this and that you have joint pain and bruise easily. This link will be useful;
Best to push for referral to a Rheumatologist as they deal with the condition and should be able to give the diagnosis. Unfortunately, not all these clinics have an interest in the condition. I don't know where you live but this link will advise on UK Hypermobility Clinics;
You appear to have a number of medical conditions to deal with and, in my experience, you will need to be able to
become something of an expert in each of these if you are going to get your health back on track, don't be put off by the failures of the current health system in this country - Maddie
Is it worth letting the Endo know I have joint hypermobility syndrome? I haven't been diagnosed with it as such but I saw a private osteopath a while back and they wrote a letter to my GP saying I am hypermobile in my spine and iliopsoas area.
I don't bruise all the time, just now and again. I also get small cuts developing in my skin and don't know how I cause them. I'm wondering if the Endo should also know about this.
Hi Jo - From what you have said then I think that it is best to get checked out to see if you do have Hypermobility syndrome and get the formal diagnosis. You could then get checked out for PoTs syndrome.
This link about diagnosing joint hypermobility will be useful;
The above link explains the diagnosis system called the Beighton score which is used to determine whether you have joint hypermobility. It advises to see your GP if you score four of more points.
Joint hypermobility syndrome can cause a wide range of symptoms and it's important to get this checked.
It may well explain your bladder issue as the pelvic floor muscles become weakened.
No harm in mentioning to your Endo that you have joint hypermobility, I don't know if there is any conflict between the conditions of Hypothyroid and Hypermobility - Maddie
Hi Maddie, thanks for your reply and the link - you've been very helpful.
I was told by a physiotherapist some time ago that I was a bit bendy and they used the Beighton score for me - I tested positive for some things but not all. I didn't quite fit their criteria. I think I scored 2 points as I could bend my knees back but the physio I saw said something like "there's some hypermobility there but I can't be sure". So it was never looked at again.
I'll send the Endo an email to say if being hypermobile makes any difference to when she sees me but I'm not entirely sure.
Hi Jo - from looking at the Hypermobility Syndrome Association website, it appears that the diagnosis can be more complicated than getting the correct number of points on the Beighton scoring system.
Might be worth having a look around their site and maybe contact them for advice. Here are a couple of links;
I don't think that a physio would be able to give a diagnosis, I feel that it would need to be a consultant Rheumatologist.
I still feel that this needs to be decided for you, either you have/don't have the condition. It appears to be yet another condition where there's a lack of understanding in the medical community - Maddie
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Recent blood results after altering meds
Latest blood test results
Advice on Advanced Thyroid Function Blood test results from medichecks
Blood test results back - is this now confirmed as Hashimoto's? Very confused...
