Hi All, Today i waited 2 hours to see my Endo to see my latest blood results and to see the next plan of action. What a waste of time that was!! I currently take 150mg Levo but still feeling tired and energyless. He told me how do you know its your Thyroid as to why you are so tired?? He said you are no longer 20 your 43. I told him i would like my Iodine checked, his responce was in all my 30 years as a Consultant i have never tested anyones Iodine. I told him i have done lots of research and having a low Iodine level can affect your Thyroid, he told me not to research and to basically put up with my Thyroid, stop researching and he thinks i may have Chronic Fatigue Syndrome. I left feeling so alone, i asked for a copy of my blood results to share with you.Any advice please.
Urea & Electrolytes
Sodium 138 mmol/L 133 - 146
Potassium 4.6 mmol/L 3.5 - 5.3
Urea * 2.3 mmol/L 2.5 - 7.8
Creatine 58 umol/L 50 - 98
Estimated GFR >90 ml/min/1.73m squared >60
AKI Stage 0 <0
Bone Profile
Calcium * 2.04 mmol/L 2.20 - 2.60
Phosphate 0.92 mmol/L 0.80 - 1.50
Alkaline Phosphatase 55 IU/L 30 - 130
Total Protein 69 g/L 60 - 80
Albumin * 34 g/L 35 - 50
Corrected Calcium * 2.12 mmol/L 2.20 - 2.60
Free T3 4.3 pmol/L 2.6 - 5.7
Free T4 18.3 pmol/L 9.0 - 19.0
TSH * <0.01 mU/L 0.04 - 4.9
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Benjamin1
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Have you had your vitamin D levels tested? Have you had your vitamin B12, folate and ferritin levels tested? Did you have a full blood count?
Sorry for all the questions but testing for a lot of the things listed in your results without the other things is pointless. For example doing a bone profile test without testing your vitamin D levels means you cannot rule out any bone disorders caused by deficiencies.
If you haven't got any results from the past few months then you are probably are going to have pay for private tests as the endo saying you have Chronic fatigue Syndrome without these is just a cop out.
I wasnt given any other results but he did say my last results did test my vit D which he said was fine, i have Pernicious Anemia and have B12 injections every 3 months so i know that is fine, my Ferritin was 5 last year but i now take Ferrous Fumerate and last blood test it had risen to 40. Im going to continue on the Ferrous Fumerate until my ferritin rises to near 100.
It did feel like a big cop out today, i thought great im seeing someone who may have a clue, how wrong was i !
Under Data Protection legislation and NHS guidelines you are allowed a print out of all your blood test results. nhs.uk/chq/pages/1309.aspx?...
I suggest you go online and find out how to get health records at that hospital. If you cannot find it then you need to send a recorded delivery letter to the endo's secretary. Regardless who you need to contact mentioning the Data Protection Act and asking for print outs of your blood test results.
One thing I've learnt the hard way, so have others on this forum and other health forums is do not trust doctors when they say your levels are "fine" or your symptoms are "normal". Get the print outs and confirm with other people who affected by deficiencies that your levels are indeed fine.
The fact that you have low calcium makes me suspicious of your vitamin D levels and until you have them it's not advisable to supplement the calcium.
Also low vitamin B12 on it's own and low ferritin on its own will make you feel cr*p.
I do recall him saying i have had low calcium the past 3 blood tests but he said my vit d was fine i remember him saying a figure of 55 if that makes sence to you ?
55 if it's nmol/L is insufficient. ( nmol/L is what the UK measures vitamin d levels in. )
You need to be over 75nmol/L to be optimum.
Some doctors will say your level is "fine" even if the lab states that you are "insufficient" as you are not at the lower border of the range. However unless you are borderline insufficient you definitely will have symptoms if nothing else is wrong with you.
I going to be blunt here - the reason why you need to get a print out of your test results is that supplementing calcium without sufficient vitamin D can lead to kidney failure as you cannot utilise the calcium.
Having worked with someone who had kidney failure and was getting a transplant from one of his relations, I discovered that doctors do not know your kidney has failed until it's completely stopped working. This is because the signs and symptoms are vague and can be attributed to lots of other diseases.
Finally never accept a diagnosis of chronic fatigue or fibromyalgia if you clearly have something wrong with you. From now on if a doctor says that to you, tell them politely but firmly that you have PA so obviously you will have symptoms.
Thank you so much, i will call the secretary tmw and ask for my test results. I was pretty shocked when he said i may have chronic fatigue, they just do not have s clue ! They may have studied our illness but theyve never lived it.
I very much doubt your pernicious anaemia is "fine" if you're only having jabs every 3 months. Most people with PA need jabs much more often than that but no longer get them with our rationed NHS services. I suspect the answer to why you feel so awful is right there. It's likely you need much more regular jabs to feel well. Have you visited the PA site here on Healthunlocked? healthunlocked.com/pasoc
And never accept "normal" - demand the results of your tests. In normal range does not mean normal for you
There's a good chance monthly jabs weren't enough either. I could be completely wrong, but wouldn't be too quick to dismiss the idea out of hand. Your B12 blood results, if you're getting jabs, will always look good - even if the true situation is that you're woefully deficient. You simply can't tell from blood tests whether you're getting enough (once you start on jabs).
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
We only need iodine to make thyroid hormone. As you are taking a replacement dose of levothyroxine you do not need any iodine, although you will of course have some.
Tiredness can be due to too muchhormone, the low creatinine is consistent with high thyroid hormone activity.
Your doctor should check out the low calcium as this can be important.
Hi could you explain a bit more about the low creatinine? Mine is very low but I didn't know there was a connection with thyroid. Thought it was because I'm veggie.
Thank you that makes sence why he was a little suprised about testing my iodine, he was bothered about my calcium and said it can fluctuate from time to time, but i have noticed i have been getting tingling in my hands and some muscle pain so i wonder if my low calcium may be the cause ?
Yup, also be aware of tingling around the mouth and muscle twitches. Your calcium and vit D (when last tested) are close to my levels. I supplemented with D3, but calcium fell further. My GP has "cheated" me out of the PTH test I thought I was due. I think it's secondary hyperparathyroidism, which articles state is imperative to get treated, to stop it developing into tertiary hyperparathyoidism.
Oh wow sorry to hear about what youve gone through, these gps have a lot to answer for. What should vit d be ? Do you think i should start taking some calcium suppliments ?
Recently, I've been eating less cheese, and am no longer aware of a feeling of glass splinters in my fingers. This may be because, while dairy is high in calcium, it's also high in phosphorus.
For calcium, canned sardines or salmon, eaten with the bones; bone broth; green veggies -- almost any minimally processed food will contribute.
I assume your doctor is keeping an eye on your low calcium and maybe trying to get it up. Sometimes low calcium is caused by low magnesium and will not return to normal until the magnesium levels are restored. Magnesium blood tests are of little use, the best approach is to try supplementing (magnesium citrate is good) for a few months.
Hi, i have looked it up and yes i do get tingling in my fingers and hands and a funny pain down my leg but i put it down to my pernicious anemia but sounds like cud b the low calcium !
Well I think it needs checking out. What I've read is that the body keeps calcium in a very tight range, because too much or too little has serious effects.
In your position I would check what tests are needed, then I would write to your gp pointing out that a succession of tests show low calcium, and detailing any symptoms which tie in with that. I would ask for it to be investigated. it is harder for them to dismiss requests in writing backed with reasonable evidence.
Then you have to check out all possible causes one by one, and if they won't do that, do it privately.
Thank u, i will contact the sectetary of the endo & insist on my Low calcium levels to be investigated. I do get the pins and needles in my fingers and muscle pains, many thanks for your advice 😊
Join the club. Really sorry been there too many times. Lost hope. I have many letters written to my endo which I have never send. I'm self medicating last year on NDT got half of my life back, since Feb this year on T3 only and seem to be getting the other half back. I'm 44 hear the age excuse since I was 37 :-(. So many wasted years, left crying so many doctors appointments. Now I follow the advice on this site. The supplements the diet the lot. So thankful for everyone here. Do your research. Pay blue horizon for your tests. It's not your age. We all deserve a full life.
Thank you and i also sympathise with you and your suffering. Yes i will continue to research and listen to the kind people on this forum, most of which are more expert than those so called Endos !
They surely are Benjamin. I've learned more here than anything else. When I first came my thoughts were really confusing so I couldn't do much. Then one supplement at a time, changes in diet, and when I felt stronger I started self-medicating and it literally saved my life. I'd be bed bound if it weren't for the people in here. Now doing a degree and taking a 800k walk in May. "Normal" tests results it's your doctors opinion. Not necessarily optimal. Your vitamins need to be top range for your thyroid hormones kick in. Have you posted on the PA forum? No way a three monthly jab is enough if you've got PA. Find Mars in this forum. She knows a lot about it.
Im so happy youve got your life back. At the moment i feel 83 not 43 lol. Are there any vits you would recommend i should be taking on a daily basis ? Thank you i will contact Mars, do i just type her name in ?
I know the feeling. You don't deserve it. Doctors should make you feel 23. Failing that, making you feel your own age :-). Jazz that has commented here knows about pa too. I don't know exactly know how to find users maybe on the search engine on the top right of the screen? Marz with a z I like her posts. Many people here know a lot. And talk to us freely. You are at the right place. Just keep in mind there are no doctors here we are all sufferers so read all as suggestions and make your own mind. I'd take the advice here any day over the doctors I've come accross.
Thank you i will def try and contact marz about my pa. I stumbled on this site and its been the best thing ive ever found, everyone is so helpful & experienced, perhaps because most of us have had our own bad experiences with inconsiderate drs/endos its caused us to research & self medicate to feel half normal !
Haha yes! We've already Said we could write a book about our experiences. It would be laughable if it weren't tragic. My last endo app if it hadn't been for greygoose and everyone else in this site, I'd have done something bad.
About the vitamins always better testing first so you'd have a baseline to work from. We usually lack D, B12, ferritin but you having PA that's obvious. I'm just learning myself and no experience of PA so the folks that have both will be great in helping you. Clutter has always given me sound advice too.....
You're not converting well, Benjamin. And that could be because your B12 is too low. Jazz has covered that - and I agree with her, you probably aren't getting enough. Were you also taking a B complex to balance the Bs?
Your low vit D will also affect your conversion. And you absolutely need your iron tested. You also need optimal zinc to convert well, and possibly magnesium.
When those things are optimal, your conversion will probably be better, and you will feel better. But Don't expect any doctor to know any of that. They know nothing about nutrition or how low nutrients affect the body. They'd far rather just say 'oh, sounds like CFS' because they they can just get rid of you because there's no treatment and no cure. Lazy and ignorant! So, now, you have to take charge.
Thank you. My ferritin was very low at 7 i told the dr straight that i want ferrous fumerate & hsve been on it ever since. My last blood test showed my ferritin had gone up to 40. Would you start on calcium ? I did used to take b vits but the niacin caused me to flush, i really appreciate your help 😊
I'm sure you can find a B complex without niacin, can't you?
Do you take vit C with your ferrous fumerate, to aid absorption?
No, I wouldn't start on calcium suppléments, they're not a very good thing to take unless you absolutely can't avoid it. Taking vit D3 will increase your absorption of calcium from food. So, it's also a good idea to take vit K2 with the D3, to make sure that the calcium goes into the bones and teeth, and not the tissues.
Im sure they must do a b vit without niacin. Il go to holland and barret and buy a b complex, vit c, vit d3 and k2 is there any one you would recomend ?
Well, I wouldn't recommend Holland and Barret, for a start! They use some very undesirable fillers in their tablets, and soy oïl in their gels, like for Vit D3.
I get all my suppléments on Amazon. I think it's probably cheaper than H and B, anyway.
I use Solgar or Jarrows for my B12 sublingual nuggets. I Don't know about a B complex without niacin because I've never looked for one.
My vit K2 is NOW, which seems quite satisfactory.
For vit C, you want one that is made from rose hips, or acerola cherries, rather than just ascorbic acid.
Ah ok. I Don't have an iPhone - or any sort of mobile phone, come to that. So, I am at the mercy of HU! Have already notified them that my smileys are not working!
Hi Greygoose, im just looking on amazon for the vits, its a bit of a minefield, the vit d3 is 5000 IU is that the one you think i should start of on ? The k2 is 100 mcg. When i order and they arrive should i take them all together along with the b vits ?
K2 100 is fine. Can you find a vit D3 of 1000 or 2000? 5000 might be a bit much.
As I said before, Don't start a heap of new suppléments all at the same time. Start one at a time, leaving a gap of about 2 weeks before you add in another one.
Hi Greygoose, i just wanted to ask, would my low calcium & vit d make me feel ill ? At the moment i have bo energy, feel sick and have headaches all the time, i feel breathless too, i just wondered if this is due to my low calcium, many thanks L
Your T3 is only just over mid-range. Most people on thyroid hormone replacement need it up the top of the range to feel well.
You should be taking magnesium, but not yet. Get established on the vit D3 and vit K2 first - and the other things - and then you can add in some magnesium. And, also some zinc, eventually.
Vit D3, magnesium and zinc all work together. Most people are deficient in magnesium and zinc because the soils our food is grown in, is depleted of minerals.
Ok great thanks and when i start taking the d3 & k2 is it ok to have them all together ? So long as its 2 hours away from my levo. I took the t3 also today, i dont no if it may be a cooncidence but i feel slightly better 😊
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trying to understand what's going on
What could be going on?
on-going Thyroid 
Help with test results. Where to go now?
TSH going down instead of up with lowering of levothyroxine
