Can someone advise on my latest blood results. I have spent the last 10 years feeling as if life isn't worth living and although, going on my bloods i haven't got it right, I can see some light at the end of the tunnel. I haven't felt this good in a decade so please be kind.
A brief background. After feeling progressively unwell over an 8 year period i was finally diagnosed with Hypothyroidism 3 years ago. I used to be fit and happy but have change into someone a barely recognise: Fat, tired, depresses, not able to exercise and had to stop working... I could go on but you get the picture. I was stated on 25mg gradually upping to 75mg over a six month period by my GP. I have been strictly Gf from the beginning. I supplement Vit D, Magnesium, Selenium, B12 patches weekly and zinc. DIO2 gene from one parent. 3 years on, after many gp and Endo appointments, with no improvement to my health, and at the end of last year being told my bloods are "happily in range" by the last Endo , accompanied with a letter to my GP noting a refusal of T3 trial trial, despite in never being much above 3, and no upping of 75mg Thyroxine dose I decided I had to do something. I am currently on 3 grains NTD, starting on half a grain and gradually upping it every 3 weeks over a 6 month period to my current dose.
If you have any then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Please stop the B12 patches now and do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results.
With a level that low I expect you may need to have B12 injections or, at the very least, prescribed supplements.
Once these have been started, please also take a B Complex to keep all B vitamins in balance. Good bioavailable brands are Thorne Basic B and Igennus Super B, but don't start taking this until after you've started whatever form of B12 supplementation your GP prescribes.
Ferritin 20.7 13 - 150 ug/L
This is also very low and low ferritin can suggest iron deficiency anaemia. Ask your GP to do an iron panel (will tell you if you have iron deficiency) and a full blood count (will tell you if you have anaemia).
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.
Vit D is just reaching the recommended level of 100-150nmol/L. How much D3 do you take?
Do you also take Vit K2-MK7?
Your current FT3 result suggests you might be taking too much NDT. When did you take your last dose before the test?
Hi, thank you for reply. Yes they flagged it along with high T3, low TSH and high cortisol.
I was considering seeing the GP about the B12 result but generally they're useless. Do you think it wise to take the blue horizon results and doctors comments to the GP or is that inflammatory?
Ferritin, I have been anemic in the past and at one point has an iron infusion, great but as soon as it was up they discharged me and to get another one I will have to start from scratch.... I am meant to have it tested every 3 months but if it's in range it's okay!
Yes my Vit D is on the way up. Taking D3-K2 with MCT oil but I'm not sure I could tell you the dose. It was 70 in March up from 50 last year. MK7?
Last dose of T3 was 24 hours before blood draw at 8am
Do you think it wise to take the blue horizon results and doctors comments to the GP or is that inflammatory?
Some doctors accept them, some don't. But if your results show a problem and the GP doesn't like it that you've got private tests done, then you just invite him to do his own to prove or disprove the private results.
Ferritin, I have been anemic in the past and at one point has an iron infusion, great but as soon as it was up they discharged me and to get another one I will have to start from scratch.... I am meant to have it tested every 3 months but if it's in range it's okay!
Are they doing an iron panel though? There's more to iron then ferritin, that's just your iron store, you need serum iron testing and there are other parts to an iron panel. And "in range" doesn't mean optimal. Once an iron fusion brings your levels into range there you have to keep them there otherwise you're on a continual roller coaster. Maybe your GP should be prescribing a maintenance dose of iron tablets.
Yes my Vit D is on the way up. Taking D3-K2 with MCT oil but I'm not sure I could tell you the dose. It was 70 in March up from 50 last year. MK7?
If it's taken over a year to bring your level up from 50 to 70 then it's been a very slow improvement. I was severely deficient with a level of 15nmol/L and I managed to reach 202nmol/L within 2.5 months.
Check the dose of your supplement. You should be on a decent maintenance dose at the moment, probably 2,000iu, and as we need a decent level of D3 for the immune system it might be an idea to aim for the upper part of the recommended range, so nearer 150nmol/L.
MK7 is one form of Vit K2. If you are taking a combined D3/K2 supplement then the chances are the K2 will be K2-MK7.
Last dose of T3 was 24 hours before blood draw at 8am
I thought you were on NDT?
Last dose of NDT or T3 should be 8-12 hours before blood draw, altering time of dose the day before if necessary and splitting the dose if you normally take it all at once.
Because you left 24 hours your result shows a false low FT3. In which case your normal circulating level, which would be shown if you took your last dose at the correct time, will be a fair bit more than 7.66
As NDT tends to lower FT4, your FT4 level is quite a bit higher than one would normally see when someone takes NDT. I think your results clearly show that you are taking too much NDT, especially as you say "I do feel a little wired, like I've had a coffee"
My mistake I meant NDT. I was unaware that I should only leave it 8- 12 hours I had just assumed that it would be the same as when on Levo... Still learning. Does the test still need to be done early morning or doesn't it matter in the case of NDT?
Vit D. Wow that went up quickly, I'd assumed it would take time to get my Vit D up - can you recommend one? The Endo flagged my low D at my last appointment and said to supplement but as she didn't ask for a follow up the doctor refused the re test.
Okay. I'll get on to the gp about my B12 and Iron panel and show them the blue horizon results and doctors comment. I guess they can only say no.
I'm loathed to reduce it too much as I can't bare to feel that dreadful again, it's been so long . I'm also still very overweight, any advice? I'd assumed that would change once my T3 was up.
Thanks again. I'll reduce my NDT, work on maximising D3 and get my B12 and ferritin in order.
Does the test still need to be done early morning or doesn't it matter in the case of NDT?
The point of an early morning test is to get the highest possible TSH when one is looking for a diagnosis of hypothyroidism, to avoid a reduction in Levo or to achieve an increase in Levo. When TSH result is of no consequence then an early morning blood draw isn't necessarily essential.
I have always used Doctor's Best D3 softgels, just 2 ingredients - D3 and extra virgin olive oil. It's often said that an oral spray is best for Hashi's patients but some have done well on softgels, others have found sublingual drops also good.
I'm loathed to reduce it too much as I can't bare to feel that dreadful again, it's been so long .
But if you optimise all your nutrient levels then your thyroid hormone replacement will work better, ferritin in particular should be at least 70 according to
Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels.
By the way, you appear to have two usernames - hyp0thy01d and sara7o. It really would be better to delete one of your accounts and just use one user name. Some people may think that a second member has jumped on the thread and not wish to get involved.
Did you know you had Hashi's? That could be the reason for your high FT3, rather than over-medication. Because you're not taking very much T3. Do you have any other results on the same dose?
Hi, thank you for your reply. I'm assuming I have hashi's as all my privite bloods over the last 3 years have shown raised antibodies of various degrees. No, I only have previous blood results when on Levo only. During the 3 years on Levo i have had a TSH as low as. 0.5 and a T4 as high as 22 but my T3 was never over 3.5 ( though just before stopping Levo my TSH was close to 2 and my T4 around 14 but all within range as far as my GP and Endo were conserned)
Yes, that's all that interests them. They know nothing about the finer points.
So, if your TPO antibodies are consistantly over-range, then you do have Hashi's. And, it sounds as if you are a poor converter, like most Hashi's people.
Well, I would say that if you don't feel over-medicated, then leave things as they are until the next test, and see what happens. The best way to see if you're over-medicated is to hold your arms out in front of you, and see if your hands tremble. If the do, then try reducing your NDT by 1/4 grain, and see if it goes away.
Thanks again. I'm not trembling but I do feel a little wired, like I've had a coffee, another thing I've given up in my quest for health!
I may drop 1/4 and see if I can get my B12 and ferrintin in order.
Any advice on the high cortisol? Blood done at 8am 24hours since previous T3. I don't understand but blue horizon flagged it, or do they just flag anything that's not in range and isn't nessaserally a concern...
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I second `seaside susie’s advice re B12. You need injections. Patches and supplements will not work. Please join the B12 wake up group on fb and post there for advice.
You’re definitely b12 deficient & under 200 you need injections. If it’s not diet related you won’t absorb from patches & tablets & yes you’re right Drs are useless with it. You need to be off B12 for 4 months but if that was taken on patches then it would be even lower. You should ask for pernicious anaemia tests best to be off b12 although they aren’t always reliable positive intrinsic means you have pa. My cause is coeliac possibly pa! Your ferritin is very low.
Thank you. I will make an appointment with my GP and ask for injections and a PA test. Am I right in understanding that B12 deficiency/ PA can cause low ferritin?
Yes a lot of people have low ferritin & folate too. B12 needs folate to work properly so I take folic acid as well. Iron now & then because mines pretty good now I’ve been very anaemic years ago & Drs will often look for anaemia but not everyone is anaemic why b12 deficiency that’s what I kept telling him. My cause is coeliac so you could get tested for that if you are still on gluten but negative doesn’t rule it out either, mine showed on endoscopy. If you are on ppis they stop you absorbing, I was but didn’t need them just injections. Good luck & keep at them for answers but injections will help lots not overnight if you’ve been deficient for years but you need proper loading dose after the tests. X
Not sure if this might be of any help...Have you been checked out for CUSHINGS DISEASE...I dont want to frighten you but it might be worth asking your ENDO....
Thanks you for your reply. My endo won't even acknowledge there is any problem with my thyroid so I seriously doubt they'll entertain a test for cushing's. Is there a privite option?
This was flagged by Blue horizons as a possibility as explanation for high cortisol. I think I'm currently going to work on my B12 and ferritin and see what my cortisol is next blood test, gets a bit overwhelming...
Feeling rubbish for ten years and putting on weight and having thyroid and VitB deficiencies can also be part of a bigger picture. Have you had your growth hormone levels checked? GH deficiency can go hand in hand with these other deficiencies (plus sex hormones sometimes) and replacement can make a dramatic difference to QoL. GPs don't want to find GH deficiency because it's costly to treat, so they tend to fob people off. They may test IGF-1 levels and say they're normal - and they may be, and you may still have iGHD - when really you would need an insulin stress test or a glucagon stimulation test.
Anyway, I throw this in as a possibility. If you have ever had a head injury, even just a concussion, it is a distinct possibility.
Thanks for your reply. I think I have had an IGF test at some point early on in my diagnosis, before I knew what I know now so didn't get the results. I wonder if I can ask for a print out of all previous bloods from the hospital and check the result.
Can you get an insulin stress test or glucagon stimulation test privitely, and what do you think the cost would be? Any additional info greatly received.
Feels never ending trying to figure out the route cause.... I'm going to work on my B12 and ferritin, get my D optimum and then do a bit more digging
I don't think you would have any difficulty getting a print-out of your previous blood results and it might be worth doing that. I don't know where you live, (re getting a private glucagon stimulation test et al) and it affects things. In northern Ireland it is almost impossible as I know from a friend's recent experience. Quite hard in Scotland too. I think the situation is better in England, and this same friend has recently been told he can be tested privately in Manchester. The GST will cost him £2,500. A lot! And he may have a battle getting the GH even if he's found to have that deficiency. But he says it's worth it to know the truth.
PS: One of the symptoms of GH deficiency can be raised triglycerides. Testing these and high cholesterol is something your GP should do for free, routinely. It might be worth asking for this, because if your triglycerides are high that is a another clue.
Its your B12 level that stands out to me like other that have commented. B12 deficiency can cause serious harm & may well be the reason why you feel so poorly. Please look at the website B12d.otg. They show that b12 deficiency affects up to 8 systems in the body producing very wide ranging symptoms and signs. They have an assessment tool which is excellant.
I dont want to scare you but people end up in wheel chairs from very low levels of B12. If caight early though many systems will resolve and the body can repair.. Your GP will not know loads about it but he/she should respond with getting their own tests in place. They will repeat the B12 but should also check a Intrinsic factor, iron level etc. We cannot live without B12. B12 is needed for good conversion of thyroid hormones too so you may find your T3 rises.
On health unlock there is a Pernicious Anemia group.....I suggest you also join up with them -there are many of us on there who are b12 deficient rather than diagnosed PA -PA is only one reason for b12 deficiency.
Just to add, no thyroid hormone replacement works effectively if your vitamins and minerals, ferritin, folate, B12 and vitamin D are not maintained at optimal levels.
I know from experience I need to maintain my ferritin at over 70 and in fact, I feel even better if my level of ferritin is around 100.
I am on NDT and I hope it has helped you as it has helped me and things will definitely improve if you work on building up your core strength.
The blood tests, ranges and guidelines were introduced to be used alongside Levothyroxine, the new revolutionary treatment for hypothyroidism in around the 1960s.
Prior to this NDT was the successful treatment for hypothyroidism with the doctor treating symptoms with a little bit of pig thyroid. If the symptoms persisted, a slightly larger nugget would be prescribed, so forth and so on until the patient was symptom free.
On NDT your TSH will go down to low, suppressed levels, it just does, because of the T3 content in the grain/tablet. T4 generally goes down in the range, so just wonder if your level of T4 is due to the low vitamins and minerals, and your conversion compromised.
T3 can be higher than the range but then the range wasn't designed to be used for NDT.
If you feel well with no adverse symptoms, like being on edge, nervous or anxious, and there is no middle finger hand tremor, I think I wouldn't be too concerned, and any adjustments on NDT should only be at 1/4 grain increases or decreases.
Obviously, if with Hashimoto's that put's a spanner in the works, and you'll need to temporarily adjust NDT when with a " hyper " phase and then again, possibly, once the attack on your thyroid has disabled the gland further.
Your ability to convert the NDT will improve as your vitamins and minerals build to optimal levels and you may find you will be able to reduce your NDT dose accordingly.
Thank you. I know you're right about getting everything optimal so I'm going to work on that and then re test.
And very I interesting what you say about the guidelines being for Levo, of course you're right but I'd never really given it too much thought.
I still don't truly understand hashi's in term of how I should medicate. I've always had raised antibodies whenever I've tested which means I've had a attack? How do I know I'm having an attack, and how do I medicate through it?
Well - as I understand things, we all have some antibodies and whichever antibodies are over range, will be indicative of which ever auto immune disease you have. ?
I'm with Graves - though now treated with RAI but presume I still carry the TSI or Trab antibody and presume if with Hashimoto's you would test positive for the TPO or TG antibody. Though have also read some people have Hashimoto's but negative antibodies, and are diagnosed by a thyroid ultrasound scan.
I think you can have these antibodies for years, as there is generally a genetic predisposition to both diseases and it's when the antibodies are triggered by outside influences, stress, anxiety, food intolerances etc, that you start to experience symptoms that send you to the doctor, and even then, your TSH may not reflect anything untoward, and a full thyroid blood panel should be actioned.
As I understand things, people with Hashi's can experience ' hyper ' swings when the immune system triggers an attack on the thyroid causing it to go a bit haywire with
' hyper ' type symptoms of an increased metabolism, nervousness, shakiness, palpitations and so on.
When the attack is over, the thyroid gland maybe a little more damaged than previously, and an increase in thyroid hormone replacement may be necessary, and eventually the thyroid gland's production is so reduced that both T3 and T4 hormone replacement maybe required, but this may take years, or may not even happen if you can control your levels of antibodies thereby reducing the severity of any possible attack.
I hope that helps a bit, but it sounds as though whilst you have raised anti bodies you have been fortunate and never had an attack, as if you'd had one, I'm sure you'd know about it.
If you see enough posts on here you read of people feeling over medicated then under medicated, whilst on the same dose, and with T3 and T4 levels spiking, going unusually high and then dropping back down, possibly lower than they were before.
If you recognise this happening it seems sensible in the short term, to reduce, or stop, taking any thyroid hormone replacement and see how you go, and when you recognise the swing is over, and the immune system quietened down, to introduce your thyroid hormone replacement again.
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Advice on latest blood results
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Latest Blood results. 
Advice please - Latest Thyroid Blood Results - good results but unwell
