Frustrated - please help me with my battle plan :)

[soupybp]

In the United States...

So, last year my daughter was diagnosed hypothyroid. In studying up on that, I suspected I was too - brain fog, fatigue, low basal temp, high bp, insomnia, mild depression among other things. In Nov. I got doc to order labs. He wanted to take a wait and see based on numbers; I said no, wanted to trial NDT because of symptoms that went with numbers pointed to hypo:

TSH: 4.53 (.3-3.8)

fT4: 1.02 (.8-1.8)

fT3: 2.86 (2.3-3.8)

rT3: 14 (8-25)

vitamin d, 25 hydroxy: 7 (30-100)

B12: 402 (200-900)

Ferritin: 23.6 (20-324)

Folate: 10.5 (>4.5)

He started at 1/2 grain and insisted that I wait 6 weeks for retest. Tried to show him the prescribing information for Armour that contradicts that, but he was unwilling to move on the point. I went along with it to get the Rx. Also had me start on 10,000 IU D3 "if I want...it's winter in Indiana, of course D will be low...) He refused to give me an order for additional iron labs.

About 4 days in on NDT, about 10am, I felt a gentle wave of "awake" wash over me. That fog of sleepiness that was always hanging on me lifted. For the next 10 days, I felt better than I have in ages. I didn't feel overwhelmed, I was productive at work, I was sleeping great, I was smiling (really smiling), I was getting things done at home. Then that started to fade. At 6 weeks, I felt worse than when I started. Basal temp is still low, bp still high, heart rate unchanged. From what all you wonderful people have taught me as well as some other great websites, I know that this too low of a dose was the cause because of the feedback loop. Told hubby, "TSH will be lower, fT4 about the same, and fT3 lower." New labs on 1/2 grain NDT, 10,000IU D3, Thorn 3-K (also take isinopril 20mg):

TSH: 2.35 (.3-3.8)

fT4: 1.00 (.8-1.8)

fT3: 2.70 (2.3-3.8)

Here's the frustrated part...He said, "your labs look great now." I said, "no they don't...fT3 didn't move. Symptoms improved then worsened. Dose increase needed." He said, "I can't in good conscience suppress your TSH further." I said, "then you are grossly misinformed regarding NDT treatment and the fact that fT3 level must be improved." Let's just say things went downhill from there. If I want further treatment, I am to go to an endo.

So, I happen to have access to NDT to be able to increase by 1/4 grain. I did that almost a week ago. It has taken a bit longer, but today I am feeling more alert and awake. I will be able to increase another 1/4 grain to 1 full grain in another week or so, and I fully intend to do so.

I have scheduled with a local endo for 2/20/19. I know that he tests D3/fT3/B12 (my mom just went last week and I got to review her lab order), and I know that he is NDT friendly, so I am cautiously optimistic.

When I see him it is my plan verify inclusion of or ask for the following:

1. Repeat testing of D3 levels to see if there has been any movement. It will have been 2 months of supplementing, but I have issues with blood draws, so if we are testing other things, lets see what we can see here too.

2. Test full iron labs (ferritin, % sat, TIBC, serum iron). I know that my ferritin is low, but I have been holding off supplementing it because I don't have all the needed information.

3. Test DHEAS.

4. Get scheduled some testosterone (total and free), estradiol, and progesterone testing in proper timing to my cycle. I suspect that I may have some estrogen dominance going on.

5. Saliva cortisol testing, in pre-ovulatory phase. I should be in that window at time of appointment. (If he won't order, I may order on my own.)

6. Test for RBC magnesium levels prior to supplementing

In addition, I plan to add the following supplements while I wait for my appointment - I have been adding just one at a time and waiting a week or so to watch for adverse effects:

B-complex (which would need to stop prior to lab work - I know the lab I use utilizes biotin technology)

Vitamin A (to complement my D3/K supplementing)

(Note, I tried zinc and selenium supplements during my 6 week window as well, but I was feeling ill on them so stopped for now.)

So what have I missed in my plan? What do you good people think I need to add or remove.

[Hidden]

It sound like a good plan but I would start taking some ferrous sulphate at a different time to the NDT and also invest in some B12 patches. Be humble though in appointment doctors have such fragile egos you have to let them think they are the ones with brains.

[soupybp in reply to Hidden]

Thanks. I agree that I likely need to supplement with ferrous sulphate, but I have seen multiple references indicating that it is best to have the full iron panel before starting to ensure that one is going the right direction.

I plan to add a B complex that has a focus on B12, but I will check into the B12 patches too.

I know what you mean about the egos. Normally I would not have been so brusque with my GP, but we have known each other for some time, he knows that I research thoroughly. Normally we are able to have respectful peer-like discussions. We both must have been having a bad day... I run the day-to-day operations of a manufacturing facility primarily staffed by men 10-20 years my senior. I am used to making them think that things are their ideas in order to get things done

That said, we all need to remember that sometimes a doctor's ego needs to be stepped on. Case in point, my hubby has a congenital heart defect that was corrected in an inefficient manner (but the only successful manner available to them at the time). Because of this, he has a variety of arrhythmias. We worked with the old, crusty cardiologist for years - and after much trial and error, we found a pacemaker setting of 90 bpm keeps most of them at bay. Crusty guy finally retires, new guy says 90 is too high. I said, nope...keeps his arrhythmias under control and explained the history. New guy changed the rate down to 80 anyway - there is no way I knew what I was talking about. 4 ER visits and a hospital stay later (me saying over and over again that they needed to put his pacemaker back where it was)...they want to do a cardioversion and catheter ablation for his uncontrolled arrhythmias and inability to walk even a few feet without gasping for breath. I said, nope...first, you put his pacemaker back to 90 bpm and prove to me that I am wrong. Within 60 seconds his rhythm converted itself back to normal, and by the next morning hubby was walking laps of the hospital. Doctor wouldn't even look at me and would only talk to hubby after that... Sometimes you just have to squash egos into a bloody pulp...

[Hidden in reply to soupybp]

It was a bit of a joke about letting them think they are clever.They are a damned difficault bunch to manage at times.

[humanbean]

Just for future reference you can order your own blood tests in the USA in most states, which eliminates the need for a doctor or insurance company to be involved. There is the difficulty of getting blood drawn though, so you either have to do finger-prick testing, get a suitably trained friend to draw blood for you, or find a phlebotomist.

stopthethyroidmadness.com/r...

There are five labs listed in the US on that link. If there are five in a country the size of the US I'm sure there must be more, but you'd have to do the research to find them. Bear in mind that the faster you get your blood to a lab the more trustworthy the results are likely to be.

[soupybp in reply to humanbean]

I am hoping to not have to go that route (but will if I have to). We are on a high deductible health plan, and due to health issues of others in the family, we have met the family deductible for this calendar year already. If I can get a doctor order, it will be covered 100% by insurance. Otherwise, it will be on top of the thousands we will have to spend this year.

[RockyPath]

I'm so sorry to hear what you're both experiencing. I've even on that road, too, here in the US. The thing that concerns me is you aren't getting your rT3 tested as a follow up. If you feel well when you start therapy and then feel worse later, it's a big red flag to me that your conversion isn't optimal. There are numerous genetic polymorphism that result in the production of more and more rT3 the more the dose of LT4 is increased. Taking NDT doesn't really help this as the ratio may not be optimal to deal with the polymorphisms.

Ulta does sell access to testing through Quest, with the cost being a bit more than your co-pay to see the doctor, but the doctor really should test the rT3 at each check, because this is the most obvious indicator of poor conversion, and explains why you feel good and then go backwards.

I had to learn this the hard way, and then teach my endocrinologist about it.

[soupybp in reply to RockyPath]

I appreciate the feedback. The thing is, the doc put me on 1/2 grain and left me there for 6 weeks....disruption of the feedback loop without enough supplement. He didn’t allow me to increase the NDT 1/4 each 2-4 weeks until reaching a full grain to hold. Since the 6 week mark, I did the increases and am feeling somewhat better. At least functional. Not feeling the backsliding. Saw the Endo last week and will get my results in a few days.