I’m reading these posts and honestly, I’m flabbergasted at how knowledgeable you wonderful people are! I feel so ashamed for not having a clue about any of it. If any of you could help on where to start, I’d be so thankful
I was diagnosed with hyperthyroidism 8yrs ago and basically have fluctuated between feeling good and feeling absolutely cr@p. I’ve never received a print out of my levels and the dr receptionist just rings to say levels need upped or if they don’t ring, you assume all ok.
I’ve extreme fatigue, menstrual periods have been hit or miss since being diagnosed (aged 36) dizzy most days or out of it and now I’ve developed weird, pinching stomach pains all over constantly (10 weeks they’ve been constant)
Went to Drs with these and they did full bloods which they said were fine plus urine and stool samples. Stool samples came back with slight inflammation and they asked me to test 4 weeks later. Those came back clear. I said I feel so lethargic and she said she would raise my levothyroxine by 25mg to 125mg. I felt less dizzy and tired for about a week and I’ve crashed again. The stomach pains are giving me anxiety now. It’s all I can think about.
I went to a health clinic and they did food sensitivity test so I’ve cut out all yeast and a few other bits. No improvement yet but this is only a few days ago.
Can I ask for results of that full blood test they did? And maybe you guys could have a look?
I’ve also been diagnosed hemochrombtosis in the last few years which is being treated. Ferritin levels currently around 60.
Any help would be brilliant on where I start. I don’t like to going to the Doctors saying the same thing every time but I’m just at wits end with feeling so rubbish.
Thanks in advance for any advice
Written by
Ktez
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Nobody is ever going to just hand you a print-out of your results under the NHS. Most doctors would prefer you don't know your exact results because then you can argue or ask questions they can't answer! You have to ask the receptionist for a print-out. It's actually your legal right to have one in the UK, but...
And, that would be your first step in taking charge of your health and getting better. Learn to understand your blood test results. Most doctors don't understand them so it would be a very good idea if one of you did!
Do you always take your levo on an empty stomach and wait at least an hour beofre eating or drinking anything other than water? Do you leave a gap of at least two hours between your thyroid hormone and any other supplements/medication?
How do you do your blood tests? Do you always have the blood draw at the same time: early morning (before 9am) after fasting over-night? Do you leave a 24 hour gap between your last dose of levo and the blood draw?
Have you had nutrients - vit D, vit B12, folate and ferritin - and antibodies tested? If not, that should be your next step.
When your GP says they did 'full bloods' that won't include a really important part of thyroid function tests - FT3. That is the actual active hormone that we rely on for energy amongst a billion other things that make our bodies and minds run well. Because of this many people in this group who are struggling like yourself order private blood tests that show this hormone FT3. Companies like Medichecks or Blue Horizons are good for this.
Do get a copy of your results, there's people here waiting to help you once you have them. It might be you just need some extra levo. It might be by getting your vitamin levels better you can use your thyroid hormone better and feel well.
If you register for the NHS app your GP surgery can authorise you to get your results in that directly.
Don't beat yourself up by saying you are clueless... that's rubbish! We've all been there and had to learn ....as the brilliant Dr Peatfield once said....
"I treat the patient is if they are just as bright as I am and perfectly able to work thing out....once given the knowledge."
You are now starting to gain that knowledge!
Try and obtain a full set of labs, post them and we can then see what is going on....and hopefully provide the answers!
Interesting you mention yeast, I’ve found that affects me too, I ended up making my own sourdough back in the days when I ate bread.
I had a recent stomach pain situation and tried an elimination diet where you give up gluten, dairy soy, added sugar and alcohol for 2 weeks. Then introduce 1 thing back in, wait 3 days and try the next. That was an eye opener and I’ve learned lots from doing it.
Best advice I had was don’t try and change too many things at once. give your body time to adjust.
Did you mean you were initially diagnosed as hypothyroid
First step is to get hold of all your blood test results and see EXACTLY what has been tested…..usually astonishingly little of relevance
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Sorry, typo error, yes it’s hypothyroidism. Thank you so much for taking the time to respond with all this wonderful info!! I’m taking it all on board in the hope that I can improve my health so thank you
my doctors surgery is so good at letting me have copies of blood tests, they will even print them out for me while I wait in reception. I like to have copies for future reference.
The suggestions that I have are from over 30 years of experience / treatment in the US. (Which is not that much different from the UK from what I have seen here, however....)
Levothyroxine does not work well for Hashimoto's disease (which accounts for a great percentage of those with hypothyroidism). I never took it for more than a few months at a time (as I searched from Dr. to Dr. to try and find out what was wrong!) I finally found a "Functional Medicine" Dr., which here in the US basically means they really try and find the root cause / a medicine that actually works. (Not the paint by numbers kind of Dr.) There I was removed from Levo and given Armour Thyroid which is a pharmaceutical grade type of Pig thyroid. While Levo is T4 only, Armour contains both T4 and T3. It was a fairly low dose (3 grains, and I was diagnosed by an outside endocrinologist with the autoimmune Hashimoto's). The T4/T3 combo worked immediately better. I have heard here that the rule is to gradually reduce Levo, when changing to the glandulars, but that's not what was prescribed for me. I stopped Levo one day and started Armour the next - again immediately better. Dizzyness gone (more like internal earthquakes!) heart palpitations gone, etc. The reason for abandoning Levo was (according to functional Dr.) it was causing Thyroid Storms - had had a couple of very scary episodes and forget about dizziness, no energy, I was quite certain I may not survive! At the time I was in my 30's. The Armour Thyroid medicine (T4/T3 combo from pig thyroid glands) and I lived quite well for the next 20 years or so, until Armour / Forest Laboratories began to change the formulation of the medicine. It never worked quite the same after that, and found myself back on the research road to what worked well. It was then that I found and suspected long before that, that Levo doesn't work well for a great number of hypothyroid suffers and even less so for those with Hashimoto's. By then the voices of those for which Levo did not work well had grown louder and louder. (The theory behind monotherapy / T4 Levo only type medicines is that the body will convert the T4 to T3 as it needs it - except for, in real human bodies, that is not always the case). Awwww, new Drs put me back on Levo - again, I can't tell you how close I came to heart attacks! Dr.s know full well that Levo doesn't work for an increasingly greater number of people and they refuse / don't / can't do anything about it.
I took myself off of Levo for shear survival. When Levo didn't work for me, and Armour / other T4 T3 combos didn't work, what to do? Many, many people here and other thyroid forums talked about non-pharmaceutical T3 (mostly) bovine glandular products that can be purchased without a prescription. That's a bit of scary road, but it worked. From this forum I learned the wisdom in starting out low (dosage) and increasing slowly the dosages. I also found a Dr. who was willing to help me find my own way. She didn't really believe that Levo wouldn't work for me (even the kindly Drs truly believe it's all in your head!), but she still agreed to help me find my way. And I did. I know there are people out there that for them Levo and never ending blood test / monitoring works. Their system really does convert the T4 (Levo) to T3. It didn't happen for me. It doesn't happen for a great number of people.
At the risk of going on far too long (for the health and wellness upon which I finally arrived was a very long and winding road), the greatest thing I found was the real root cause of my autoimmune Hashimotos - a lifelong, continuing and toxic overdose of iodine. For those of us who do not detox quickly (a whole nuther story), iodine from foods, particularly processed foods, (here in the US - iodized salt is on everyone's table / cooking), dairy, anything from the sea, eggs, and on and on (many foods have naturally occurring iodine these are few that have higher amounts) had built up (iodine is naturally taken to the thyroid) until my own immune system saw it as an enemy. With a lower iodine diet, my body did finally relieve itself of the excess iodine, and now I have been two years without prescription thyroid hormone replacement (and minuscule amounts of bovine glandular T3). I did not believe the natural gurus, the ones who say Hashimotos can be healed. And yet, here I am - 98% healed. It's not easy. Taking a pill is much easier! But when Levo doesn't work....(see above) I highly recommend the book: Thyroid Reset by Dr. Alan Christianson. He is an endocrinologist who he himself battled with Hashimoto's and won. He has helped millions. The book was once on the New York Times best seller list. Do keep in touch here and share what you find that works for you. So many, many of us have helped each other. It's what you do when main stream medical won't / can't / don't know how help.
One more thing re: hemochromotosis. My husband has been treated with Hemochromotosis for the last 10 years. Here in the U.S. the favored method of treatment is phlebotomy - blood letting. Not to say too many bad things about it - it gradually worked for my husband. They keep his ferritin count at around 50 - the theory is that it will drain any other organs that might have been helping his iron overloaded liver, might be storing iron (tiredness was one of his main complaints). Interestingly, they told hm the iron overload doesn't usually affect women as badly because of menses, and the loss of monthly iron. For him it took about 50 years of iron overload (he was 55) before he began to search for a remedy / find out what was wrong. His heart stared skipping beats (Cardiologist was absolutely NO help!), but when our GP recommended monthly phlebotomy, his skipping heart AND tiredness went away. He passes physicals in flying colors now . Another thing we learned was that turmeric helped to keep the iron overload down, once the phlebotomy had removed most of the problem. The Dr. confirmed that there was some evidence to suggest that turmeric would help. We have no doubt.
All of this to get back to the liver and the thyroid and how they ARE connected - according to Dr. Alan Christianson in his book Thyroid Reset. Again he does have a degree in endocrinology, with many years of successful practice with both hypo and hyper thyroid conditions. In the book, (Thyroid Reset) he explains how relieving the liver of toxic overloads (whether it be iron or many other toxicities in today's modern diet, environment, etc.) "switches on" channels of hormonal balance and metabolism. I'm sure I'm not giving the explanation just here, and Dr. Christianson is not the only Dr. / naturopaths that have made that connection. The main point that may be being missed by Dr's who don't understand hemochromotosis, is that the tiredness (which is also a major complaint with thyroid suffers) may not be relieved by mega doses of levothyroxine. The idea presented here is that you may have to attack the tiredness from two different fronts / solutions. The liver is at the center of both problems from my experience.
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Feeling lost where do i start?
Symptomatic but my results don’t reflect me feeling unwell - help! 
