Undermedicated?

[Sunny537]

Here are my latest results: TSH - 6.10 (0.2-4.2), Free T3 - 4.3 (3.9-6.7), Free T4 - 14.9 (12-22).
The doctor says my results have improved from my last thyroid medication review they asked their labs to do but I can't work out why she has said this. Do my November results indicate I was undermedicated?

October results: TSH - 0.52 (0.2-4.2)

September results carried out by the same doctor surgery as this month's: TSH - 0.30 (0.2-4.2), Free T3  - 4 (3.9-6.7), Free T4 - 15 (12-22)

So I've now got my Levothyroxine moved up from 50mcg to 75mcg but I feel more underactive on the increased dose.

Symptoms I now experience: weight gain, cold intolerance, fatigue, brain fog, joint pain, headaches, puffy eyes, dry skin, decreased sweating, lumpy feeling in front of neck.

I have an endo appointment in 2 weeks and I have many things to ask him/her. I had a short synacthen test done back in January and although the cortisol result was normal it was unusually high for a hypothyroid person and I think it was because I drank coffee before and during the test. My endo didn't tell me what I could and couldn't drink at the time the test was ordered. I also had a celiac screen but I wasn't told how long I needed to do the gluten challenge for and instead of doing the gluten challenge for 8 weeks I did it for 2 weeks. But when I restarted the gluten challenge a few weeks ago I could only manage 9 days on it because I had some digestive problems - gas, abdominal pain, constipation and diarrhea. These are just two concerns I have and I'm worried that I'll have too many for the endo and I to focus on when I go to the appointment and I overrun on appointment time.

Thank you.

[Sunny537]

The doctor I am registered with does not readily test for antibodies. The doctor I was registered with previously ordered the antibodies test.

I don't know if my doctor would accept the private test results but my endo has looked at them and gave me her thoughts about them.

[gimel]

Yes, it is not unusual for antibodies to be attacking the thyroid gland for some time before enough function is lost to affect thyroid hormone levels.  

Seems like your doctor has been willing to test about every month so why would you expect difficulty now?  If you use the test kit, would your doctor accept the results as accurate and directly comparable to prior lab results?  If not, that could waste your money using the test kit.  

With T4 meds, taking it at different times depends on what works best for you.  For most consistent result, it is usually advised to take on an empty stomach and not eat for an hour after med. That is not an iron clad rule.  It is also generally recommended to take other meds/supplements three to four  hours after taking T4.

[Sunny537]

Thanks for reply.

Is it possible that I've had the thyroglobulin antibodies for quite a while before any symptoms developed? A nutritionist I spoke to reckoned I had been ill for about 6-8 years.

I have a private test kit for thyroid function to be done. If my doctor does not agree for me to be retested in 4-5 weeks would it be a good idea to perhaps use this test kit instead? I haven't been taking the Levothyroxine at the same time every day though because I took it at night and then had insomnia. So I then switched to day time because I would bypass the insomnia. Would taking it at different times during the day have made any difference to absorption?

[Sunny537]

Thanks for your reply. I take sublingual lozenges and yes, they do go very powdery and I have gagged on the residue from them.
I didn't know there was a sublingual spray for B12. I'll have to look out for this. I think my health store might be able to help me with this.

[gimel]

I agree with the Endo about the Thyroglobulin antibodies test result.  So the probability is early stages of Hashimoto's Thyroiditis.  With Hashi's your autoimmune system erroneously sees the thyroid gland as foreign to your body and produces antibodies to attack and eventually destroy the gland.  Along the way to destruction of the gland, natural thyroid hormone production is diminished and has to be adequately replaced by thyroid med.  

As mentioned previously, your Free T3 and Free T4 levels are much too low and consistent with being hypothyroid. so it will be best for you if you try to get back in for followup tests in about 4-5 weeks after the med change, and re-test.  At that time I am sure you will need a further increase in meds, of course dependent on how you are feeling.  It would be also be a good idea to find out about clinical treatment.  

You will also want to get your D, B12 and ferritin to optimal levels.  And, as you proceed, if you find that your Free T3 level is lagging your Free T4 increase, then you may need to discuss with the doctor an addition of a T3 med.  Remember that scientific studies have shown that Free T3 correlates best with hypo symptoms, while Free T4 and TSH did not correlate at all.  Getting a doctor in the UK to prescribe T3 meds seems to be very difficult, so that is when you would need to aggressively pursue what you need.  

[Red_Star]

Can't hurt to tell her you are taking vitamin D supplements.

[Red_Star]

Haven't heard anything about sublingual B12 absorption affected by the size of the blood cells. Are you using sublingual spray? I switched to this which I find superior to the tablets which go all powdery under the tongue and takes 5 minutes to dissolve.  I take 2000mcg daily personally. Four sprays and I'm done for the day. :)

[Sunny537]

Thanks, I have a lot of research to take with me by the look of things. But the endo I saw last time sent me an email regarding my anti thyroglobulin levels that I didn't understand.

I had a private blood test which showed my anti thyroglobulin levels, although not elevated, were present. They were 103.5 and the range was 0-115 for negative.
After I did much reading on this I found out that although the antibodies weren't positive their value was quite high. I raised this with the endo's secretary and the endo got back to me saying that the antibodies targeted against thyroglobulin are causing the inadequate secretion of the thyroid hormones. But the antibodies aren't in positive range so I don't see how a negative reading can impact on the thyroid hormone levels and I thought that if the antibodies are negative they have no effect on the thyroid function.

[Sunny537]

Hi, yes. I take sublingual B12. It's 1000mcg. I read somewhere that having a low Mean Corpuscular Volume - MCV - makes it harder for the body to absorb the B12 but this wasn't from an expert as such so can't be sure if by taking it it'll improve.

My endo doesn't know I'm on any Vitamin D supplements but she has said in a letter she copied me into that I have Vitamin D Deficiency. Might it be a good idea to tell her?

[Red_Star]

Are you taking sublingual B12?  Still a way to go to get to optimal vitamin D range.

"Heaney et al. [10] established that optimal calcium absorption occurs with a 25(OH)D level greater than 32 ng/mL." - Calcium and Vitamin D: Skeletal and Extraskeletal Health.  32 ng/mL (80 nmol/L).

"The rates of breast, colon, and rectal cancer decrease as vitamin D levels increase. At first there is a rapid decrease, as very low levels of vitamin D [less than 10 ng/mL [25 nmol/L]) increase to 20–30 ng/mL (50-75 nmol/L). Then the cancer rate decreases more slowly until vitamin D levels reach about 50 ng/mL (125 nmol/L)." - Vitamin D Council.

[gimel]

By taking the supplement, your Vitamin D is good.  B12 is best when in the upper end of the range.  Your ferritin is way too low.  For best results it should be about 70.  

Good luck with the Endo.  Be sure to keep in mind  what you really need, which is clinical treatment.  One of your fellow UK members who had a lot of trouble getting adequately tested and treated, but was finally successful, told us this.  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

[Sunny537]

Thank you, I was tested for Vitamin D, Vitamin B12 and ferritin.

Vitamin D was last tested in September - 73 (50-75 suboptimal). It was 43.6 in June and in July it was 59.6. I have been taking a 3000IU supplement for this so I think this has helped in me looking "brighter" according to my previous follow-up with my endo.

Vitamin B12 was last tested in July- 362 (180-900). Previous results are December 2013 - 363 and May - 395. I have been taking a supplement and despite taking this consistently from January through to now. It is a methyl- form of B12.

Ferritin was last tested in September - 15 (30-400) and in October - 28 (30-400)

[gimel]

All of your many symptoms are frequently related to being hypothyroid due to low levels of the biologically active thyroid hormones, Free T3 and Free T4.  I am not quite sure why your were told that your test results had improved, since there was hardly any change in your Free T4 and your Free T3 only went from 4 in Sept. to 4.3 in Nov.  Both your Free T3 and Free T4 are way too low in the range and are causing your hypo symptoms.  Many members say that symptom relief required Free T3 in the upper third of its range and Free T4 around the middle of its range as a minimum.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.  I say that because TSH frequently becomes suppressed when taking thyroid meds adequate to relieve symptoms.  That does not mean you are hyper when that occurs, unless you do have hyper symptoms due to excessive levels of Free T3 and Free T4.  

I am mentioning this because so many doctors do not understand that and will tell you that you are hyper if your TSH becomes suppressed, and want to reduce your meds, regardless of your Free T3 and Free T4 levels.  So guard against that in the future, especially since you are in the UK, where the NHS pressures doctors to rely mostly on TSH and don't seem to want to even test for Free T3, much less treat clinically.

In preparation for your Endo appointment, you can get some good insight from this link.

http://www.hormonerestoration.com/Thyroid.html

When you see the Endo I suggest that you should find out if he is going to be willing to treat clinically. as described.  If not you will most likely need to find a good thyroid doctor that will do so.  In the UK that often means going private.  In view of your symptoms I also suggest that you should request to be tested for Vitamin D, B12 and ferritin.  Hypo patients are frequently too low in the range for these as well.