Had some blood tests done privately as I've felt unwell for a while. Symptoms range from fatigue to full feeling in my throat, hoarseness and dry eyes alongside various others.
Been working with a nutritionist and following a strict 1800 calorie diet with a tough exercise regime for 3 months but the result has been weight gain.
Blood test for advanced thyroid function shows normal for all markers except Anti-Thyroidperoxidase antibodies (TPEX) is 29.86 - far end of normal range.
Anti-Thyroglobulin antibodies (TGAB) is 474.1 - over 4 times the max normal range.
Worried they won't take me seriously. Any advice greatly appreciated.
Thanks in advance
Written by
Lisalisajay
To view profiles and participate in discussions please or .
Having thyroid symptoms doesn't follow that you will get treatment sadly but a few things to help yourself. They may send you for a set of blood tests so be prepared. Test a better taken as early as possible and fasting though you may not be able to control the timing but good advice if you can. That will get the TSH at its highest and that result can often determine whether you get treatment.
TSH is naturally highest early in the morning and food lower sir hence the timing and the fasting. Doctors often say non fasting but then lower meds if already being treated as they thing TSH is too low.
If you look on the Thyroid Uk site, they run this forum and are also recommended by NHS Choices, they have loads of thyroid info but they also have a list of thyroid symptoms. It's quite extensive and thankfully we only get a handful but print it out and tick your symptoms. You may find some you wouldn't have thought of as being thyroid related. The doctor may decide your bloods aren't needing treatment just yet but this may persuade him to give you a trial.
Let us know how you get on. Also if you could post the bloods you have that could be useful for people to comment. Always include the ranges as they differ from lab to lab so probably not the same as we are used to.
I'd say you have Hashimotos Thyroditis so auto immune and very common. Lots of us have it. I'd recommend going gluten and casein free (cows milk) it's a big change to start but once you get your head around it and all the alternatives you can pretty much eat as normal plus lose weight.
Gluten and Casein look like the thyroid to the body (molecular mimmickry) so when ingested and they get in to your bloodstream via leaky gut(intestinal permeability) the body sees an invader so sends T cells out to attack but then mistakenly also attacks the thyroid.
In a past post I've listed all the things that I find have helped me, may be worth a look.
Research leaky gut. Chris Kresser is good for this.
Or Dr Axe, you may still be able to watch his podcast on leaky gut if you look at my posts.
Izabella Wentz Hashimotos Protocol book is good she also has a website.
Dr Datis Khazzarian also has brilliant books also a website.
Dr Susan Blum md The Auto Immune Recovery Plan is good book for diet info.
FYI B12 should be 600 plus under 500 will start to cause neurological changes.
Vit D around 60 no less
Folate and Ferritin mid range.
Your Dr will say ok at much lower levels as they don't want to supplement people as very costly!
Can you post your bloods on here so we can check nothing is being missed with your thyroid?
Iron and haemoglobin levels awaiting results from GP. Was diagnosed 18 months ago with severe anaemia and have been on iron supplements (200mg x 3 daily) since diagnosis. Initial tests January 2016 levels for both less than 2 (should be 10 times higher at least)
Most recent results are 14 haemoglobin and 17 iron.
No B12 results since January 2017 when they were the high end of normal according to my GP.
Thyroid symptoms have been ongoing throughout adult life and was hoping symptoms associated with anaemia would disappear with treatment but many are still as bad.
I was hoping for some advice on questions or what to say to my GP.
Diet wise I'm already gluten free and clean as I train a lot. No processed foods. No sugar. Minimal dairy. No starches/bread/potatoes. I've been eating this way for 4 years now and it works well but I'm still symptomatic.
I've looked through the thyroid uk website and I've read loads of info on these conditions so I know it's tricky which is why I asked for advice from people who have been through it. I'm not new to having to fight for diagnosis as it took 5 doctors and 5 months to get tested for anaemia last year. Was prescribed loads of unnecessary drugs prior to one dr actually recommending a blood test. They thought I was allergic to everything suddenly and lazy, and even tried to give me 4 different inhalers for asthma (which it wasn't). I could've died but thankfully one GP was savvy enough to get bloods done.
I can see why you aren't feeling good. Your Free t4 is only 34% through the range and Free T3 is 12% through the reference range. Neither of these are high enough for most people with autoimmune hypothyroidism to have any hope of feeling well.
The problem you have is that your thyroid numbers are within the range, and doctors will refuse to believe that you have a problem or any symptoms. They won't admit (or don't believe) that antibodies cause any symptoms, for a start, and they think the TSH tells them everything they need to know. Many of them seem to be unaware that positive antibodies makes thyroid function test results fluctuate, and that the fluctuation can be extreme, making the patient hypothyroid one week and hyperthyroid the next. Such fluctuations may mean that the patient's body is constantly struggling with lots of symptoms that are frequently changing.
I think the risk you run is of being offered anti-depressants (prescribing these makes doctors money). If you refuse the ADs then you could be marked down as a non-compliant patient.
***
Ask your GP for copies of your recent blood tests including the reference ranges. The haemoglobin and iron look reasonable but without reference ranges it isn't possible to be sure. It would be helpful to know your ferritin and transferrin saturation, if at all possible.
If your ferritin is still low, despite the (apparently) good haemoglobin and iron, then this would be worth showing to your GP :
Title : Effect of iron supplementation on fatigue in nonanemic menstruating women with low ferritin: a randomized controlled trial
Be aware that people in the UK can buy iron supplements prescribed by the NHS without a prescription. If this interests you, ask for more info.
The thing you need to avoid is taking iron supplements, raising your levels, then stopping iron, then waiting until you are deficient again to re-start supplementing. You really need to continue taking enough iron to maintain your levels once they are optimal. And testing a couple of times a year is a good idea for someone who a) was as severely anaemic as you, and b) needs to take a maintenance dose of iron.
***
The vitamin D level needs to be higher - many of us feel best with a level of 100 - 150 nmol/L. Sadly, your doctor won't believe that you have an issue with vitamin D because yours is within range. Even if he did the most that he would prescribe is 800 iU vitamin D3 per day which is a maintenance dose, not a dose for actually raising your level. You would need about 4000 iU - 5000 iU per day to raise your numbers. And you would need to be tested in a couple of months to see how well you were responding.
***
Sadly, I can't suggest anything that will get you treatment for your thyroid under current NHS guidelines.
GPs will usually not treat if TSH is below 10. However the antibodies test shows you have auto lmmune thyroiditis and your FT3 and FT4 are low in the range and should be over half way . I think you may have to persuade your GP to give you a three -6 month trial of levothyroxine and then test again.
Or alternatively buy some NDT and self medicate, although if you go down that route you will never get treated by the NHS. because your thyroid test results will look all wrong for hypothyroidism to be diagnosed (in fact you may be diagnosed hyper or with pituitary problems by an ignorant doctor). You would only need a low dose - half a grain may be enough, but you would have to pay for your own blood tests and interpret them yourself (although you could use this forum or your nutritionist to help). On the other hand you may feel better.
Have you got a result for Ferritin (stored iron) level? I didn't see it n your list. Given that you have had iron deficiency problems you might be low.
I'm waiting on most recent iron and haemoglobin test results.
Just wanted to flag up that you said you're on a 'tough exercise regime'. If your thyroid is underactive then doing a lot of exercise is a bad idea. You'll use up the limited T3 you produce very quickly and your thyroid is going to struggle to keep up. Your T3 result is very low in range, and your T4 is on the low side as well. Better to ease off and get your thyroid and any vitamin/mineral deficiencies sorted out first.
Also, your Vitamin D is very low too, definitely worth taking a Vit D supplement of around 5000 i.u. once daily for a couple of months, then re-testing.
I second what Jadzhia says. Of course you're putting on weight when eating only 1800 calories, and being on a tough exercise regime.
For a start, you need calories to convert - more calories than a person who isn't hypo - and you are using them all up on exercising - quite apart from using up your T3. So, you just are not going to be able to replace that T3 - your FT3 reflects this, it's very low. And it's low T3 that causes symptoms like weight gain, and difficulty losing it.
The problem with nutritionists is that they rarely know anything about thyroid. Once you are hypo, the normal rules go out the window, and you have to learn to live with your new body. And tough exercise regimes can do that body a lot of harm. Optimise your T3 first, and then listen to your body, and just do as much exercise as it can tolerate - it won't make you lose weight, anyway!
I appreciate you all taking the time to reply. Was hoping however, for some ideas as to what to say to my GP and how to get the help I need. I wasn't looking for diagnosis help because that already is in progress.
My nutritionist is a specialist in auto immune issues and on his suggestion I got the blood tests done.
The advice above is very good especially wrt. vitamin D. As vitamin D is a hormone it helps with so much stuff going on in the body (not just thyroid, but adrenals, growth and sex hormones too). The one thing you could ask your GP, especially if your iron is still very low, is to check your stomach acid levels. I do know of someone who successfully got this done through her GP (I haven't) and had it properly looked into... to be honest the best solution as Grey Goose has said, is to have T3, or at least improve conversion of your own thyroid hormone to T3 as that will stimulate acid production. The stumbling block for you is low iron, as you need that for T3.
I'm guessing that you already take b12 as a supplement as you say that your blood levels are high. I eat liver which also contains riboflavin and makes the haem-iron more bioavailable. There is a lot of evidence pointing to riboflavin assisting iron absorption and it's mostly found in dairy products and organ meats. As you're off dairy you may be B2 deficient??? It's worth looking into. N.B. Your nutritionist should know this stuff.
I have a very good balanced diet and have a good vitamin/supplement regime.
I'll ask about b vits but as they are not helpful with recommending any blood tests I won't hold much hope. Hence the private blood tests already done.
I want saying it wasn't good advice. I was merely pointing out that my question wasn't about diagnosis or causes. But in help to get the right diagnosis and what to say to my GP.
Lisa, have you been a patient of your GP for a long time so you have a relationship established with him/her? If so, you may have a better chance at treatment. You are armed with plenty of information. I am not under NHS as I live in U.S. And although it is not quite as difficult to obtain treatment here, it is still not easy. Otherwise I would not have been mistreated and under medicated for 22 years!! When I finally got what I needed it was because I had finally figured it out for myself and was armed with information. I suggest you do as silverfox suggested and print out the symptom list for Hashimoto's, check off all the symptoms you have and take it with you to your appointment. Tell your doctor you need someone to "partner" with you in health care and you want to feel well. Tell him you have been treated for anaemia but these symptoms related to thyroid persist. You could even tell him you understand the NHS does not want to pay for thyroid treatment but you are suffering and have lost your quality of life. Try to do this in a matter of fact way and not an emotional way. If you can briefly explain exactly how this affects your life it may help, e.g. I struggle to maintain my home. Most docs think we are lazy and overeaters so certainly tell him about your eating and exercise plan and your inability to lose weight. Practice what you want to say before your appointment and go prepared. The most you can hope for is treatment with thyroid hormone. Don't expect him to help you at all with diet or supplements. They don't know about that even though it is crucial. You seem to be ahead of the game in this department so if you can just get him to give you the hormone you need you will feel much better. He will argue that a TSH of 2.12 does not require treatment. From what I have learned on this forum your docs seem to have their hands tied by the NHS so you may have to resort to self-medicating. But some members have reported success with getting NDT and/or T4/T3 treatment. So if at first you don't succeed you may have to shop around for another doc. I wish you the best. Please let me know how you make out.
Unfortunately the medical practice I go to has a variety of drs most of which are locums. I don't have a regular GP and I have been once on 6 months to see someone. I'm not there all the time.
If necessary I will see one privately and hope that they are more thorough.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
nervous about starting Levo
Advice about medication after GP appointment.
GP appointment today - help!
Pointless GP appointment
GP appointment
